08-27-2004 Our precious baby girl was taken from us today. She is with the Lord, & she will never hurt again.
08-18-2004 Heather's bone marrow aspiration came back positive. This means there is cancer in her bone marrow. This is the first time in 22 months that her marrow has tested positive. And this is the worst possible news we could have heard. We met with doctors this afternoon to discuss options & we decided we will do another 4-day round of chemo beginning next Monday. Heather came home with an NG (feeding) tube. We hope this will help her get stronger since she's not eating well. We can not ignore her condition, either. The doctors told us that "we are fighting a loosing battle". They gave us little hope. Only a miracle will save her now...Dad.
08-15-2004 Heather did not sleep well last night. She woke up many times throughout the night & she was hurting some of those times, requiring morphine. For those who may not be aware, when she was dicharged Friday, she came home with two little pumps & her chemo port still accessed. This enables us to give her a morphine push when there is "breakthrough" pain. She's drinking tea & she munches on some things every once in a while but she's not eating as consistently as we want her to eat. While we were in the hospital last week, a new mass was discovered on her left leg. This is same leg that had the recurrence in January of this year. The new mass is just above the spot that has been radiated for the past two weeks. It's on the back & side just slightly above the left knee. This spot will be marked for radiation tomorrow. She will continue radiation treatments tomorrow, on her back & left knee, & she will have a clinic/doctor visit as well...Dad.
08-12-2004 Heather slept all night last night, thank the Lord. Yes, the Lord, the Great God Jehovah, the Matchless Risen Messiah, King of Angels. There is none like Him. No matter what, this is our testimony. ...Dad
08-11-2004 Heather was admitted this morning. She was up much of the night, again, in pain. She hasn't been eating & drinking well since she's been home & as a result she's lost weight. She hasn't slept more than five hours straight since she's been home. Most nights she's slept 2-3 hours then she wakes up screaming in pain. We give her tylenol with codine & she might sleep for an hour or so & wake up screaming again. Then after 20-30 minutes of screaming, she'll go back to sleep. After an hour, she'll wake up screaming. This has just about worn us out physically & emotionally. We are very, very tired & weary. She is resting since being admitted. They gave her i.v. morphine & that made a world of difference. She'll begin to get i.v. hyper-al(sp) which is one step away from an NG tube. Hopefully the hyper-al will help her gain her strength back & then she'll get more active & hopefully get hungry & thirsty as a result. We shall see. They began radiation on her back Monday. The doctors say there is disease in the marrow in the back & also in three vertebrae. This is very serious. This is also the source of much of her pain, so we're hoping radiation will relieve it. More later...Dad.
08-07-2004 Heather did not have a good night. Even though she came home with a pain patch on, she was in pain most of the night. She won't eat or drink anything. She's acting agitated much of the time & won't let anyone but Mom touch her. We had to get tylenol with codine for her this morning, to help with her pain. As a matter of fact, she is so uncomfortable that she told her Mommy: "I want some medicine". What that means is she wants the medicine (morphine) that makes her stop hurting. We are praying she will eat & drink & that we will be able to manage her pain.
We are very much aware of the critcal stage in which we are. We are having conversations we never, ever dreamed we'd have. We must face things that are & consider things we don't want to consider. Our priority is keeping her as comfortable as we possibly can...Dad.
08-06-2004 Heather was discharged this afternoon...we're all home after 23 days in the hospital...Dad.
08-06-2004 Heather should be coming home this afternoon, after her radiation treatment. We learned yesterday afternoon that the doctors believe there is disease in her marrow in her back. This is the news we never wanted to hear. In all that she has been through these nearly two years, even with a stage 4 diagnosis, she has never had disease in her marrow. The doctors want to radiate the spot on her back & we don't know when that will begin...Dad.
08-03-2004 As of this evening Heather is still in the hospital. We began weaning her off of morphine a couple of days ago by slowly decreasing the amount she receives hourly, as well as decreasing the amount we are able to "push" when we feel she needs instant relief due to intense pain. She still complains of pain in her back, her jaw & sometimes in her left leg, although it doesn't seem to be nearly as severe as it was two weeks ago. She has received 6 of 10 radiation treatments to the 4 areas they are radiating which are: the right front side of her jaw, the left front side of her neck, the left pelvic area, & her left leg below the knee. The first radiation treatment was very difficult & she was terrified. She had to be re-marked on one spot that day, too, so the entire session in radiology took 2-1/2 hours. It was a long afternoon. However, each treatment after that has been a little better. Yesterday (08/02) she woke up at 05:00 a.m. & she played in her bed all day. After her radiation treatment that afternoon we took her by the clinic to see friends there, then we took her to the playroom on her floor & she painted a picture & let the child life worker read her a book. This is the first time she had been out of her room (other than for scans, MRI,X-rays & radiation) since she entered the hospital about 18 days ago. She's eating a little better the last few days, so we're hoping she may get to come home by the end of the week. Her hair has all fallen out again, just as it was beginning to grow back. This is a result of the chemo she received about 3 weeks ago...Dad.
07-26-2004 Heather had a nice birthday party yesterday, with many friends & relatives visiting her. Thanks for all the gifts & especially the birthday prayers for our precious little girl. She slept through the entire night without waking up last night. She had an MRI this morning & it took a couple of hours, so she had to be sedated for the procedure. She came out of the sedation better than previous times. She ate a little while later & drank some chocolate milk, then went to sleep. We'll know results from the MRI within the next day or so. She should start radiation treatments tomorrow...Dad.
07-24-2004 Heather is doing about the same. She sleeps a lot because of the morphine, which was increased Friday night after a pain episode involving the left-front side of her neck where there is a tumor pressing on her jugular vein, & also pain in her left arm, left elbow & left lower leg. Every day or so she will sit up in the bed & play with a puzzle or watch t.v. till the morphine knocks her out again. She will begin radiation treatments Monday...Dad.
07-23-2004 Heather slept better last night. She's doing about the same overall. Her left pupil is smaller than her right, due to the tumor in her neck pressing on a vessel supplying blood to the eye, or so the doctors say. This has been the case for several days. It may or may not return to normal after radiation. She went to radiology yesterday to be marked for her radiation treatments that she'll begin next week. As of now they are saying she'll receive 10 treatments. She has been struggling to overcome a horrible rash on her little bottom. The spot is so bad that we haven't been able to wipe her; we've had to rinse her off & then apply 3 medicines to the area. This hurts but she must endure it every time she has a diaper changed. The area is a little better but still it needs to clear up a.s.a.p. She wakes up in the middle of the night saying "it's too loud" or "it hurts my ears" & she cups her hands over her ears as if she's hearing a noise she can't stand. But there is nothing going on such as a t.v. being too loud or the cd player going. Thursday morning when I was with her, she woke up screaming "I can't see". She rubbed her eyes a few times. I asked her to look at the t.v. Then I asked if she could see it now & she nodded her head. She moans when I try to take her picture & says "No. No". So, I take very few pictures. She complains on & off constantly about her back or leg hurting her.
Heather will be three years old Sunday, July 25th. She will celebrate her birthday in the hospital...Dad.
07-22-2004 Heather is doing a little better. She sat up yesterday & talked for a little while. She ate cookies a couple of times & drank some chocolate milk, too. She's tolerating the morphine better now that she's been on it for 5 days. She will not continue on the experimental drug. Since new activity is indicated, all plans are "out the window" & the doctors had to re-think a plan of attack based on her current condition. We agree with them that radiation should be the next step. The tumor in her neck must be radiated a.s.a.p. She will have her pelvic region radiated & possibly her left leg below the knee. She still complains of pain in that area of her left leg, even though the latest scans don't show any activity. The best the doctors can do is not 100% certain, so they could be missing something there. There is new growth in her lungs, even since her scans from a few weeks ago. We're not sure if they can radiate any of those because the chest area near the heart can not be radiated. We'll know more about this in the next couple of days. One doctor used the term "buy some time" & "this is not a cure" when discussing Heather's condition & treatment. That sums the situation up very well. Her disease has retuned, again, & has progressed. As a reminder, the nature of neuroblastoma is that it doesn't usually respond to chemo after being treated initially. Heather has taken the maximum amount of several chemo drugs, so her options are fewer than before...Dad.
07-17-2004 Heather slept well last night. She was uncomfortable yesterday evening, though. Her fever hasn't been as high as earlier this week. She needs prayer for infection. She's been drinking water & nibbling on some food, but it could be much better. Still, we are thankful for whatever she will eat...Dad.
07-15-2004 Heather slept well her first night back in the hospital. However, her fever remains high. At one point yesterday, it was 104.7. At 04:00 a.m. this Thursday morning it was 104.4. Two hours after receiving tylenol, it's still over 102. She is receiving antibiotics & i.v. fluids. She doesn't want to eat or drink which isn't surprising with a temp this high. We're praying that God will reduce this fever fast...Dad.
07-14-2004 Heather is at the clinic this morning & will probably be admitted to the hospital later. We were up all night with her. She ran a high fever & was very fussy, complaining that her neck hurt. She sounded a little raspy when she talked so we wondered if her throat was sore. Anyway, when she got to the clinic they immediately stuck her finger & took her temp, which was 103.5. As I'm typing this I'm waiting for another phone call to update me. The standard thing is to admit & run 5 days of antibiotics. I'll post an update when I get it...Dad.
07-13-2004 Heather received blood & platelets yesterday. Her counts were down. However, she's been eating a little better & playing very hard. She likes her new Wiggles DVD, "COLD SPAGHETTI WESTERN".
So that I don't get fussed at later, I'll mention this now & again a few more times before the big day. Heather has a birthday coming up July 25th. She will be 3...Dad.
07-08-2004 Heather came home yesterday afternoon. She was very glad to see brother & sister. She didn't sleep well her first night home, though. She woke up many times throughout the night, crying & saying "my head hurts; my head hurts". Words can not express the range of emotions & thoughts that can overtake you as something like this happens. She eventually slept without waking up sometime after 03:00 a.m. She's doing fine this morning, talking & playing normally. Mom & Dad are wiped out but we'll get through the day. Heather will go to clinic tomorrow for a check of her counts...Dad.
07-06-2004 Heather slept all night as she usually does when she's in the hospital. She'll have her chemo today. Please pray she does not get sick from it...Dad.
07-03-2004 Heather has not been sleeping well at all. We're having to give her tylenol with codine to quiet her down. She complains of leg pain in her left leg, where the reoccurence appeared in January 2004. She's running a low-grade fever most of the time. The doctors said this is because of the neuroblastoma. She's also limping a little more as this week has progressed. She wakes up crying & moaning, sleeping about 15-30 minutes at a time. She will take her pre-chemo treatments Saturday & Sunday at the cancer clinic & admit to the clinic Monday when she goes for her last pre-treatment. She'll have chemo Tuesday. Pray for God's mercy on our little girl...Dad.
06-30-2004 Heather is having her second of seven (not six) pre-chemo treatments at clinic this morning. We discharged from the hospital yesterday afternoon. She'll do the next several days of pre-treatment out-patient. She'll be admitted this weekend to finish up the pre-treatment & then do the 1 or 2 days of chemo. The doctors may keep her a few extra days to monitor her. We'll know more this weekend. We're praying this new pre-treatment drug will enable the chemo to kill all of the cancerous cells active in her body & that no cancer will ever return. Here's a summary of the results of her scans done last week. CT thorax, abdomen, & pelvis. Findings consistent with progression of disease. There has been interval development of new mass at the base of the left neck that extends at the level of the thyroid gland; that extends inferior to the level of the great vessels & demonstrates mass effect in the left internal jugular vein. The left internal jugular vein is patent. There is also interval development of soft tissue masses within the left illiac chain of the left inguinal region. There has also been interval development of new borderline to mildly enlarged lymph nodes in the left illiac chain & left inguinal regions. 2. Increasing as well as interval development of new periperal lung opacities throughout both lungs which is also worrisome for progression of disease. Whole body bone scan: Progressive involvement of proximal portion of the left tibia representing metastatic neuroblastoma. No additional sites of involvement noted at this time.
Click here for a more detailed report.
06-29-2004 Heather's platelets came up to 100,000. This is exactly where she needs to be in order to start chemo. Thanks to all who fasted & prayed for her during this time. As a result, she will start her new chemo treatment today. She will be receiving a new drug for 6 days, then she'll get a couple of drugs, for one day, that she's had in previous treatments. This new drug will work to "turn on" any cells that may have built up a tolerance to chemo, making them receptive. We are praying that her body will receive this drug & that it will be even more effective in doing it's job. And as a result of this, all cancerous cells in her body will be destroyed. Thank you God, for one more day with Heather...Dad.
06-27-2004 Heather ran a fever for a little while Friday afternoon/evening but it went away before midnight. Her platelets need to come up before she can start chemo. They've dropped three days in a row. She complains on & off about her leg hurting where she had her biopsy & sometimes will favor it when she walks. She doesn't have much of an appetite while she's on i.v. fluids. Right now it looks like we've got another week & possibly two more weeks in the hospital...Dad.
06-24-2004 Heather had a bone scan & CT scan yesterday. She has an MRI scheduled today. The doctors told us last night that Heather has spots on both lungs. Some of these are old & have been there since her first scans & x-rays, but we don't want to see new ones. She also has a knot on the right front side (facing her) of her neck. We don't know if this is a swollen lymph node or a tumor. They are considering a new drug for her next treatment as well as having her repeat her initial treatments following the same roadmap. Other options are being discussed as well...Dad.
06-21-2004 Heather was admitted this afternoon. She's on antibiotics. The doctors that saw her in the clinic agreed that they want the surgeon to look at her incision from her surgery Thursday to verify nothing is going on that they aren't seeing. I'll update within the next day or two with new info...Dad.
06-21-2004 Heather has had a long weekend. As I type this (09:20 a.m.), she is at the clinic for a scheduled appointment. However, she's been running a fever since Friday evening. She's had leg pain on & off from the surgery Thursday & the fever has made her tired & generally yucky as it comes & goes. We've been in touch with the on-call doctor & we've been watching her closely all weekend. We don't know if the doctors will let her start her chemo today or perhaps admit her for stronger anitbiotics than the one she's on now. I'll post an update when I get it...Dad.
06-17-2004 Heather came through the procedures well this morning. The initial results from the biopsy indicate no tumor, but inflamation/infection instead. Thank the Lord. There will be more tests done on the tissue sample to be conclusive, but this initial report from the pathologist is very good news. Both the pathologist & the surgeon said that they didn't expect to see anything else. It was refreshing to hear them speak in such a positive & affirmative way about this. We don't live in fear but that's not to say we don't have our "moments", either. All of the best sermons & all of the best refrigerator bible verses mean nothing when your precious helpless child is being taken from you by a surgeon, & you are reminded once again just how fragile life is & how it can all change in an instant. Heather will go back to clinic Monday for a counts check. She may start chemo then. We should know the results of the bone marrow aspiration then, too. Thanks to all who lifted up our little treasure. And thank you God, for one more day with Heather...Dad.
06-16-2004 Heather will have a biopsy tomorrow, Thursday June 17. They will be looking at the swollen lymph nodes on her upper left leg area. They will also do a bone marrow aspiration while she is sedated. Her tests this morning, Wednesday 16, revealed her "tumor markers" are up. Tumor markers are substances that can often be detected in higher-than-normal amounts in the blood, urine, or body tissues of some patients with certain types of cancer. Tumor markers are produced either by the tumor itself or by the body in response to the presence of cancer or certain benign (noncancerous) conditions. This news concerns us. Please join us as we cry out to God for mercy on our baby girl...Dad.
06-12-2004 Heather's counts were up a little more at Friday's clinic visit. The swollen limp nodes have not gone down after a week of antibiotics, though. Her doctor wants a surgeon to look at this Monday, so her next chemo treatment will be determined after the surgeon checks her out. Please pray with us that these lumps will not be anything serious. It is odd that these show up right after her MIBG scan. We are concerned about this as you can imagine...Dad.
06-08-2004 Heather received platelets this morning. She'll go back to clinic Wednesday & have her counts checked again. She may have to get blood then. Her counts were down a lot more than we thought they'd be. Please pray that her counts will come up very fast. She'll start her next round of chemo as soon as her counts do come up. We all had a good time at the Children's Miracle Network telethon Sunday. WJTV did a great job. We were on late Sunday afternoon & as usual, Mom did all the talking. (So what's new, right Cory?) We heard that Heather's pictures & some video of her were used at the end of the telecast. We did not see any of this, so we hope we can get a copy of it. While we enjoyed the event very much, it was bittersweet. Seeing pictures & video of friends who are no longer with us, brought back a lot of memories. God only knows how these children have touched us & effected us. We miss them all so much more than words can say. Thanks to all who phoned in a pledge, no matter what the amount. There are no small contributions to this hospital...Dad.
06-04-2004 Heather had to go to the clinic this morning. Last night she complained that one of her legs hurt her. I asked her to show me where & she did. I could feel what seemed like 2 little bumps, so her Mom took her in first thing this morning. The doctor believes it's an infection, not a tumor, so she's taking an antibiotic. She'll do another chemo round when her counts come back up. We thought it would be this week but it could be next week, so we'll keep the site posted. Please pray with us that these lumps, whatever they are & whatever the cause, will go away & stay away. We do not yet know the results of her MIBG scans. When we do, we'll post it.
June 5 & 6 are the dates for the Children's Miracle Network Telethon on WJTV!
The telethon runs Saturday June 5, 8:00 pm -11:00 pm & Sunday June 6, from 11:00 am - 6:00 pm. The first 30 minutes of each hour is devoted to broadcasting the national telethon & the second 30 minutes is devoted to broadcasting the local portion of the telethon. We are scheduled to be interviewd Sunday afternoon. Please watch & support this event!...Dad.
06-01-2004 Heather will have an MIBG scan Wednesday & Thursday morning. If her counts are up this week she will have another chemo treatment very soon...Dad.
05-28-2004 Heather is getting platelets today. Hopefully she'll begin building up within the next few days & won't require any more transfusions any time soon. Elizabeth has a birthday tomorrow! Big sister will be 6! We're having a skating party for her. I'll try to get some good pictures while I'm not chasing wee ones around...Dad.
05-26-2004 Heather got platelets Monday. She had to get blood one day last week. She has a clinic visit this morning, to check her counts. She's doing a little better with her eating though she still will ask for something, get it, & turn it away only to ask for something else...that she might refuse again. We will let you know when she's scheduled for her next chemo round...Dad.
05-19-2004 Last night, Heather went to sleep & woke up after about 3 hours. We can set our clocks by this schedule. She wakes up almost every night after sleeping for about 3 hours. We never know if she'll go right back to sleep or if she'll be restless. Usually, she's restless & she won't fall back to "restful" sleep until around 04:00 or so. However, last night she was sick on her stomach around 01:30. I wont go into detail but since some people do want to know details, I was washing sheets & clothes at 01:46 a.m. while her Mom bathed her. Such is this lifestyle. Heather has a clinic visit this morning, so please pray her counts are up & we can stop the neupogen shots...Dad.
05-14-2004 Heather had a platelet transfusion this morning. Her counts have dropped as a result of the chemo (vincristine & carboplatin) she received last Thursday. Last night is the first night since coming home from the hospital Monday, that she slept more than 3-4 hours without waking up. Her appetite isn't very good. She is "whiney" much of the time when she feels bad like this. She wants to be held &/or rocked constantly. She's hard to please most of the time. She may ask for something to eat & then reject it when she gets it. The neupogen shot she's taking every day makes her feel achey & tired. Please pray her counts will come up quickly & her appetite will return. She's a trooper, much tougher than I could ever be. She is my hero...Dad.
05-11-2004 Heather came home yesterday afternoon. She's doing well but as usual she didn't sleep that well her first night back. She is having to get Neupogen shots every day. We'll go back to clinic Thursday morning for a check of her counts & hopefully they'll be high enough that we can stop the shots...Dad.
05-09-2004 Heather was admitted late Friday night. She's been running fever since she got her chemo treatment Thursday morning. This is normal for this particular chemo to effect patients this way. She'll probably be in 3-5 days. Pray that she'll get her appetite back & begin to build quickly. Thanks to all who continue to pray for her.
Goodbye Reeves. What an inspiration you were.....missed but not forgotten.
04-20-2004 Heather will go back to clinic today to check her platelets. She will probably be getting platelets today. She had a clinic visit yesterday & even though her counts appear to be coming back up her platelets are very low. She's playing & as busy as ever. Now that the weather's warmer she wants to be outside as often as possible. We must be very careful with her when she's exposed to sunlight. She's more sensitive to it than before. Her hair began falling out this weekend. It shouldn't all come out as it did when she received initial chemo, but we really can't be sure. She will have a bone scan Thursday of this week. She'll have a CT, MRI, & bone marrow aspiration the following Monday (26).
Goodbye Janay. We'll miss your smile very much.
Goodbye Ricky. Thanks for playing with me. I'll always remember playing with you in the hall & you sharing your little cars with me & Heather the first time we met you.
04-05-2004 Heather got platelets today. Her counts were down as is normal after chemo. She's eating well & playing all around the house. She had a good weekend, playing in the yard & enjoying being outside...Dad
Goodbye Dalton. I can't believe I'm writing this. What will we do without you racing around the clinic on that tricycle? I'm filled with sorrow just thinking about that. Thanks for letting me take your picture last month. I hope Jesus reads this to you so you can know all the lives you touched while you were here. You were loved beyond measure by people you knew & people you didn't know very well. I hope you're riding a tricycle down those streets of gold. We will see you soon. We're praying for your Mom & Dad. We can only imagine their sorrow.
03-31-2004 Heather is doing well with the Topotecan this week. We pray this round will not knock her down. Today is her Mommy's birthday! Oh boy! Another excuse to eat cake!...Dad.
03-26-2004 Heather's clinic visit this morning revealed that her counts are all up. She'll go back Monday morning & if she's still up in counts, she'll begin maintanence chemo again. She's had a rough time the last couple of weeks. She's had 2 platelet transfusions during this time as well as having to get Neupogen shots every day. But she's doing better & the daily shots were stopped Wednesday, thank God...Dad.
03-12-2004 Heather came home yesterday evening. She's doing well right now. Her appetite has been better the last 2 days. She's scheduled for a clinic visit the middle of next week & she should be getting another maintanence chemo treatment at that time, too. We're glad she's back home. Actually, she didn't want to come home this time. She was having so much fun coloring & painting that she wanted to stay in the hospital. She made new friends with new patients & when we'd go to the play room, they would all have a lot of fun playing together.
Goodbye Mercedes. You fought so long & so hard. You will be missed by many, yet we rejoice because we know that you don't hurt anymore. Your Father who cares for you more than we ever could will give you treasures far beyond anything any of us could ever imagine.
03-08-2004 Heather's doing better. She's still not eating as well as we'd like but she's active & she had no fever yesterday. She'll probably get platelets today because her counts are crashing. Fever causes her platelets to drop even more. She'll remain in the hospital several more days...Dad.
03-06-2004 Heather has been admitted to the hospital this afternoon. We were up most of the night with her last night. She was running a very high temp, she was sick, she was feeling pretty bad. We got her settled finally & she slept for a few hours. But her fever returned today & again it was high. We contacted the hospital & the doctor on call said for us to bring her in. We'll post more detail & news within 24 hours...Dad.
03-05-2004 Heather had a rough night last night. She woke up around 01:00 a.m. & didn't go back to sleep until 04:30 or so. She complained on & off that her tummy hurt. She was irritable & hard to please. We gave her zofran, which is a nausea drug, but she still complained of tummy pain. We don't know what this *really* might mean. A 2-1/2 year old communicates as best they can. So, was it gas causing cramps or what? We continue to watch her. Her appetite is still not good & we have a hard time finding anything she wants. When she says she wants something, you can get it for her, put it in front of her, & she'll tell you she doesn't want it. She does this most of the time. Her platelets were over 60,000 yesterday at her clinic visit. This is normal since she received chemo a week ago. She may need blood or platelets next week, though. She has a clinic visit Monday, so we'll see how she's doing then. For those who pray, please pray for the Belk family. They have a son who's a cancer patient & he was brought into the clinic yesterday while we were there. He wasn't doing well. He was admitted to the cancer hospital. We did a radio interview on a local station that was taking part in the fund raiser for the Batson Hospital for Children. Heather's Mom interviewed on 3 stations Wednesday while I entertained the little one. Helping this hospital is second nature to us after being a part of it. God continues to allow us to share in circumstances we never thought possible. God bless the doctors, nurses & all of the staff at the Batson Hospital...Dad.
03-03-2004 Heather is doing o.k. The chemo has made her sick every day except yesterday. She's getting nupegen shots again daily because her white counts are crashing. She doesn't like this at all & neither do we. Her appetite comes & goes but this is normal after chemo. She's watching "KIPPER The DOG" videos a lot & being fussy, hard to please. When she feels this bad, she whines quite a bit & she wants to be held constantly. Please pray that she begins to build back up quickly so that we can stop giving her these shots every day. She has a clinic visit Thursday to check her counts. Thanks so much to all who lift up our precious little girl.
Today is the beginning of the radio fund raiser. Click here for details on the Children's Miracle Network. Heather's Mom has been invited to come down for an interview. She did an on-air interview last year & the radio station remembered her, so they asked her to come back this year. More details later...Dad.
02-26-2004 Heather completed her radiation treatments today. Thank God she did not have to be sedated for any of those treatments. She was scheduled to be admitted for a round of chemo but there's no room available in the children's cancer hospital so she'll have to do it out-patient tomorrow morning. If there are still no rooms available, she'll be given a one-time dose, since she won't be able to get the usual 3-day dose of this drug. Learning there were too many patients in the children's cancer hospital was difficult to deal with today. On the way to the clinic this morning, we discovered a local FM radio station was doing a radio fund raiser for that other, more well known cancer clinic. You know, the one promoted by t.v. & movie "stars". While this is a good program to support, sending money to them takes money away from our state's only children's hospital & cancer clinic. Ours is run by the state & therefore not allowed to advertise. So, most people in this state don't know they're even here & they don't know about all of the services they provide. Our hospital can't compete with that other hospital's obviously well supplied advertising budget. It's up to those of us who know, to get the word out. Our children's hospital is scheduled to have it's annual radio fund raising event March 3-5. In my opinion, it's tasteless & pathetic for you-know-who to have their fund raiser in this town less than two weeks before our own children's hospital has theirs. The radio station that hosted the event & the you-know-who hospital, both knew that our hospital would be having their fund raiser & they knew the dates, but it obviously didn't matter to them...Dad.
02-24-2004 Heather is scheduled to be admitted Thursday for a 3 day chemo treatment. We'll be in the hospital for 4-5 days, depending on how long the doctors want to watch her after the treatment's completed. She's doing well, with only 1 more radiation treatment to go & that will be tomorrow...Dad.
02-20-2004 Heather has completed this week's radiation treatments without needing to be sedated. She has 3 treatments left (I think). Monday at her clinic visit doctors will determine when she'll begin a new chemo treatment. She still has many nights where she doesn't sleep for more than 3-4 hours a night. We don't know how she functions during the day but she manages it very well. We don't do so well, though, but we muddle through the days as best we can. She's complained a few times this week that her left leg hurts. Her appetite is o.k. some days, not o.k. others. This is typical, though. We'll post next Monday night or sometime Tuesday with news from the clinic visit. Thanks to all who lift her up in prayer...Dad.
02-12-2004 Heather has had 2 days of radiation & she has not had sedation yet. This was a major issue to overcome & we pray she'll finish the remaining 10 treatments without having to be sedated. The plan is for her to have another round of chemo when these treatments are finished. We'll know more about the date for that as the radiation treatments come to an end...Dad.
02-08-2004 Correction to the update on 02.05.2004 concerning the pathology report. The biopsy tissue, not the tumor, was 80% dead. Heather will be in clinic tomorrow morning to have her vitals checked. If her vitals are high enough she'll be marked for radiation & probably begin radiation Tuesday. We'll update Monday night...Dad.
02-05-2004 The pathology report is complete. The doctors said the biopsy tissue was 80% dead. Heather is receiving blood today at the clinic. They're trying to build her up in preperation for radiation treatments, which need to start asap. Thank you Lord for one more day with our precious little girl...Dad.
02-02-2004 Heather's platelets were very low at her clinic visit this morning, so she received platelets. We don't know yet if this will delay her radiation treatments...Dad.
01-30-2004 Heather came home last night. She will go back to clinic Monday morning to have her counts checked. The immediate plan of attack is that she will begin radiation on her left leg sometime next week. We'll know more after the clinic visit...Dad.
01-29-2004 Heather will be admitted this morning. She will have surgery Friday to replace her chemoport. Orthopedics will biopsy the bone in her leg to determine the nature of the disease in the leg...Dad.
01-27-2004 Heather had a bad day Monday. She was not able to eat until after 03:00 p.m. She was not able to have an MRI done as scheduled. Her port was not functioning properly, so the needle was replaced twice. Even after this, there was still a problem with it. She had a drip placed in her right hand so that she would be able to get IV's as needed. This is uncomfortable for her but it does work. The doctors will determine whether or not her port should be removed & replaced with a new one. She is scheduled (again) to have the MRI of her leg done this morning. Please pray that she will not be delayed getting in to MRI. Pray that she stays asleep while the MRI is going on so that they can get all of the pictures they need. And pray that this issue with the port can be taken care of quickly. We've had several trying days with the doctors & as a result we've had some less than pleasant encounters. We will not back down. Heather has been through so much this past week; much more than most people want to hear about. We will do everything in our power to see that she's spared needless pain & inconvenience. She's just a baby & can't speak for herself, so we must speak for her. Please pray earnestly that the doctors involved will have clear thought in all matters related to Heather's treatment & that they will be very thorough in their observations, tests & treatments...Dad.
01-24-2004 Heather had a bone marrow aspiration yesterday. It came back negative, which is good. She's scheduled for an MRI Monday morning, to get a full set of pictures of her left leg. Please pray that she will stay down for this procedure, so that they can get all the pictures they need. She's very hard to put down. She'll have to be sedated for the MRI & most of the time, even with sedation, she wakes up before the procedure is completed. She's favoring her left leg again this (Saturday) morning. At times, she won't put her weight on it at all. The bone scans, head MRI & CT scans of her mid-section from earlier this week, all came back negative. It appears the disease is only in the area just below her left knee. We are very concerned even though no other places show up as "hot spots". More later...Dad.
01-21-2004 Heather was admitted to the hospital this morning. Tuesday morning she complained that her left leg hurt her. By the afternoon, she was crying & screaming as the pain would come & go. By then, it was happening every 30-45 minutes. It would last about 5 minutes. It was strange & we were very concerned. She went to the clinic late Tuesday afternoon & had her leg x-rayed. There was a spot showing up on the x-ray, but there was no radiologist there to look at it & discuss it with the doctor. She was scheduled for a bone scan Thursday morning, so she came home with instructions to bring her in if there was trouble during the night. Tuesday night she continued to have the pain, every 30-45 minutes, waking up screaming, moaning & crying. She wasn't getting restful sleep; even after taking tylenol with codine. She finally fell asleep without waking up, utterly exhausted, & slept from about 04:00 a.m. till 07:00 a.m. She went to the doctor this morning because she was scheduled to start her last round of topotecan today. Several doctors looked at her x-rays from Tuesday. She was admitted to the hospital. She had an MRI & CT scan around 03:00 p.m. We realized at this time that she had not complained about her leg all day. She had also not had any of the pain spells as she had done the day before. She'll have a bone scan done Thursday morning around 11:00 a.m. We won't know the results of any tests until sometime Thursday. It could be that the cancer has returned & we've been told this. We will post an update as soon as we are able...Dad.
01-03-2004 New pictures were added to the December 2003 section. Heather finished another round of topotecan last Wednesday (12.31.2003). She's doing well. Her appetite comes & goes which is normal, but she is eating pretty well, all things considered. All the children had fun at Christmas. We played with new toys & games all day & spent the day just being together. Thank you, Father, for one more day. Thank you to all who lifted up our precious little girl last year. God bless you...Dad.