12 ~ 10 ~ 2003 All of Heather's tests from the previous month have come back clean...Dad.
12 ~ 09 ~ 2003 Heather is doing another round of topotecan this week. Her counts were checked before she began yesterday & they are high. Thank You, Lord Jesus! Please pray that this round of chemo will not knock her down badly. Pray that she'll remain strong & build back up quickly...Dad.
11 ~ 20 ~ 2003 Heather's platelets have almost doubled since Monday. They're coming up & her counts are much better. She's building up again, on her own, & this is what we are praying for. Thank You, Lord...Dad.
11 ~ 13 ~ 2003 Heather's counts are falling & she may have to get platelets. She's scheduled for a clinic visit tomorrow so if she needs them she'll get them then. She's pretty bruised up on her little legs, but this is normal for a low platelets condition. She's eating, playing, singing, & she wants to walk around the neighborhood all day long. She's definitely an outside girl. On another note, tomorrow is Joshua's birthday. He'll be 8. Thanks to all who continue to lift up our precious little girl...Dad.
11 ~ 07 ~ 2003 Sunday November 9 marks one year since Heather was diagnosed. As a reminder to us all, she was given a 40% chance of survival. Only 12 more years to go & she'll be out of the window for neuroblastoma! Heather finished her third & final round of topotecan maintenance chemo Wednesday November 5th. She is scheduled for the usual tests thoughout the rest of this month. This will include scans, possible MRIs, hearing tests, & a bone marrow aspiration. She's doing well. Her appetite is good some days, not so good on others. She's fussy sometimes & hard to please, which is normal since her counts will begin to drop after the chemo. Pray for her counts to remain high. By the way, she went trick-or-treating & had a great time. Her Mom pushed her in her stroller, right behind big brother & big sister. When she'd get to the door she'd hold her bag open as wide as her little arms could hold it. She really had a great time strolling around looking at all the wacko costumes. We saw a few gross ones but for the most part they were cute costumes. Our neighborhood had the largest amount of people it's ever had. Police cars patrolled regularly as did police on bicycles. It was crazy but it was safe. I've gained 500 lbs eating all the candy the wee ones won't eat. On a more serious note, please pray for a little boy named Dalton. He was admitted for emergency surgery Wednesday afternoon with a ruptured tumor in his head. He's 3 years old...Dad.
10 ~ 20 ~ 2003 Heather had her second round of maintanence chemo last week. She was sick Thursday but she was o.k. by the next day. Saturday she played in the back yard, digging in the sand & making a very big mess. And, she rode her tricycle, too. She really enjoyed being outside with everyone. God blessed us with perfect weather to be outside. We're thankful for the day & the time together. Her clinic visit this morning showed her counts to be down but this is normal after chemo. She didn't sleep well last night. But, she's still doing well overall. She's maintaining the weight she's gained & she continues to eat, play, talk & sing songs from Blue's Clues & my fave wacky dudes, the WIGGLES...Dad.
10 ~ 09 ~ 2003 Sorry for the delay in updates. Our house is on the market which keeps us hopping, soccer league started, both Dads-in-law have been in the hospital...Heather is doing well & will begin her second round of topotecan Monday October 13th. Tomorrow, 10th, she'll have some dental work done. She's developed cavities as a result of the enamel breaking down which is a side-effect of chemo. If you see this early Friday morning please pray for her & the doctors. She'll be sedated for this procedure & the rest of the day she may be pretty yucky feeling. She's still eating well & maintaining her weight. All of her counts are up & climbing without nupegen shots every day. Thank You Lord.
Goodbye Taylor. We wish we could have seen you before you went home. We'll never forget you, girl. You inspired Heather to hop up on her poll & take a ride. We'll see you one day when, as hard as it is to believe right now, none of this will matter any more...Dad.
09 ~ 20 ~ 2003 Heather received 3 days of the topotecan treatment, not 5 days as originally planned. She tolerated it well & didn't get sick. However, her counts have dropped quite a bit as a result of the topotecan. She'll go back to clinic Monday to have her vitals checked & it may be that she'll need platelets. She's doing o.k. even though she's been knocked down a bit. Her appetite is o.k. but it could be better. Her energy level remains high. She's dumped the WIGGLES for Blue's Clues & this has upset her Dad so he does everything he can to convince her she'd rather watch them. Of course, she wins those arguments...Dad.
09 ~ 04 ~ 2003 Today is "day plus 100" as they say in the Bone Marrow Transplant Unit!! It's been 100 days since Heather's bone marrow transplant! This is a big day, a day we've been looking forward to very much. Heather will begin a maintanence chemo program next week. She'll have three 5-day treatments of a drug called topotecan. Please pray for her as she goes through this treatment with this new drug.
Thanks & God bless all of you who lift her up...Dad.
08 ~ 28 ~ 2003 Heather is doing well. She's had lots of tests lately & she'll have more in a few days. She's having a bone marrow aspiration, which will tell us if her marrow is still clean. This is not a fun procedure, so please pray for her Friday morning, 08.29.2003. MRIs & other scans indicate no cancer, thank you Jesus. She's eating well & gaining weight. She's talking more & more each week. She reads to me, too. She gets her little books & pretends she's reading the entire stack to me. Of course I let her read everything she wants to read to me. She's a very busy little girl. We'll post other test results when we know them.
People often ask "How is Heather?" When I tell them she's fine, they think that she's over it &/or the cancer is gone. It's not that simple. This disease reponds to initial treatment well but it has a history of returning, depending on the stage of the cancer & the child's age at the time of diagnosis. And, when it returns it usually doesn't respond to treatment well, if at all. Heather's initial diagnosis gave her a 40% chance of survival. The neuroblastoma window is up to age 14. She'll be out of danger in about 12 years.
Goodbye Charles. We miss you so much more than we are able to say. God took Charles home 08.18.2003. What a tough little guy. I'm crying as I type this because I wish I could come see you & watch that BIBLEMAN video with you. You are in our hearts forever...Dad.
08 ~ 03 ~ 2003 Heather continues to do well. Her appetite is good, she plays & talks & watches the WIGGLES daily, & she enjoys swimming in our new pool. She is scheduled for tests the mornings of August 8, 11 & 12. Please pray for her especially on the mornings of these test days. She'll have to be sedated each morning. These tests make for very long days for her, Mom & Dad. She's foggy headed & irritable as the sedation wears off, making her fussy & very hard to please. Most of all we ask that those who choose to do so, pray that the scans & other tests will show no sign of cancer activity...Dad.
07 ~ 28 ~ 2003 Heather had a nice birthday party. It was good to see everyone who came & shared that special day. She's doing well & has actually gained a little weight. Please pray for a little friend of ours named Charles. He turned 8 years old Friday but, unfortunately, had to spend his birthday in the cancer hospital. Those wonderful nurses did have a party for him, though. We stopped by to see him Thursday after our clinic visit. It was great to see some of our doctor & nurse friends, too. But, it was horrific to learn they had so many patients that they had to move some to another floor because they ran out of room. There are more than twenty beds on that floor, all filled with a child stricken by cancer, or sickle cell anemia, or some other life threatening disease. They should all be outside playing, riding their bikes or swimming...not laying in a hospital bed, fighting for one more day of life...Dad
07 ~ 22 ~ 2003 Friday July 25 is Heather's birthday!! She will be two years old!!
07 ~ 14 ~ 2003 Heather is doing well. Her vitals are up & she continues to build. She goes to the clinic every 2 weeks for IVIG (immunoglobulin) infusions. She's eating & playing normally. It's still tough not to be able to go outside every time she wants to but we handle it as best we can. Heather had a big day yesterday. The Children's Miracle Network gave away a home as well as other prizes in a fund raising event. Heather was asked to draw one of the prize names. It was quite an afternoon. We met new friends, saw some "old" friends, & got to do radio interviews letting people know first hand how much we appreciate the hospital & all it has done. Goodbyes.... Goodbye Paris. Heaven has you now & you're not hurting any more. I hope Jesus is stroking your beautiful hair from time to time & giving you the desires of your heart. We didn't know you very long but you have effected us more than anyone can imagine. Goodbye Tremia. You would have been 5 a few weeks ago. You too, are in our hearts forever. We already miss your colorful hats & smiling face...Dad.
06 ~ 21 ~ 2003 Heather had a big evening yesterday. I have failed to mention this before...sorry, but we've been pretty busy the past month. She was the Honorary Chairman for the South Rankin County Relay For Life sponsored by the American Cancer Society. She had a lot of fun walking around the park. Lots of people wanted to meet her & take pictures with her. We met many 'survivors' as they are called & that's another humbling experience. This was my first time at one of these events but it won't be the last. I encourage everyone to participate in one of these events. There are fun things to do for the wee ones, lots of great food & entertainment, & just a good "old fashioned" time of neighbors visiting with each other. The atmosphere is very, very rare in this day & time. How? It's about others...Dad.
06 ~ 11 ~ 2003 Heather came home today. She's doing well. She's an immunocompromised patient & she's on a restricted diet. Thanks to all for the many prayers during this critical period. We appreciate them very much & we know that it's those prayers that got us through this. We also want to thank the doctors & nurses who took care of Heather. Words fall short in trying to communicate our thanks to you. You are special, gifted people & you provide an incredible service & care that most people, thank goodness, will never know...Dad.
06 ~ 06 ~ 2003 Heather is doing better today. She walked more today, she tried to eat a little, & she slept very well the night before. She talked more today & her counts were up. It was obvious she felt better. The best news is that she had her pick line removed from her neck this afternoon & we are very glad to see that...Dad.
06 ~ 02 ~ 2003 Heather is doing a little better today. Her fever hasn't been as high as previous days & she's not quite as fussy. She isn't wanting to walk around or play & she's not eating. This is normal, though. She's in the phase after the chemo where they "bottom out". The site where her pick line is located, in the right side of her neck, has been irritated & the bandage around it has been changed a few times. This isn't a fun procedure & it reminds us that we'd like to have a word with the genious who decided it was wise to put this line in this spot. Please pray that this area will continue to clear up & not be irritated & that she will gain her strentgh quickly. And, thank you MRI & CT sedation nurses...Dad.
05 ~ 30 ~ 2003 Heather has a clogged chemo port. She's running a fever & doesn't feel well. Please, please call upon the Lord to make her body very strong, to fight off any infection, & to cause her fever to go away. We continue to petition Him for her complete healing...Dad.
05 ~ 28 ~ 2003 Heather had a rough day yesterday. She had her stem cell transplant procedure that morning. She was sick for most of the day after that. She had a good night last night & was finally able to rest. She will be in the hospital for 3 more weeks. Please pray that she will continue to get stronger every day & that she will not be sick. She's been through so much. And nurse Gwen, we miss you & look forward to seeing you soon!...Dad.
05 ~ 25 ~ 2003 Heather has had a good week, all things considered. She's gotten sick a few times but it's not been as bad as predicted, thank God. She's not had much of an appetite. The doctors told us this morning that she has some blood in her urine. Please pray specifically for this. This is one of the possible side effects of the chemicals she's receiving. Today, Sunday, is the last day of her chemo. Next week she'll receive her stem cells back. This could be a tough week, since the chemo causes patients to "bottom out" several days after it ends. In a nutshell, it kocks them down slowly as they receive it & then they bottom out for awhile afterwards. They are prone to getting sick since their resistance is down, they're lethargic, have low platelets, low counts, no appetite, they're fussy, etc. God have mercy on my little girl & keep her little body strong & resistant to adverse effects. I have not been able to be with her since Tuesday night. I got a sinus infection a day or so after that & I've been on antibiotics. The doctors don't want me around her while I've got this yuck & I certainly do not want to take the chance that I could make her sick. I hope to be with her very soon. I miss my baby very much...Dad.
05 ~ 21 ~ 2003 Heather had an o.k. day today. Yesterday & last night were less than o.k. The pick line was placed in the right side of her neck. It eventually had to be taped to her head, too, to insure that it doesn't get pulled out. I added photos to show this. When the chemo is being infused she's got a lot of tubes around her & it's an effort to keep an eye on all of it. She was given morphine several times last night for pain. The pick line hurt her neck & her chest. Her tummy was upset, too. As today progressed she talked a little more & got silly a few times but she's not wanting to walk around. She wants to be held all the time so she's feeling pretty yucky. She has many things that must be done on schedule so she has charts for these. I added a picture of her charts. She gets a sticker when she does one of the items on each chart. She'll get a prize for all of her stickers. I bought a new movie for her, just for this hospital stay. It's a new WIGGLES movie entitled WIGGLE BAY...Dad.
05 ~ 20 ~ 2003 Heather didn't have the pick line or bone marrow aspiration done yesterday. She's scheduled to have those done this morning. Chemo will begin tomorrow. Pray her little body will be very, very strong this week. God have mercy on my little girl...Dad.
05 ~ 13 ~ 2003 Heather is doing pretty well right now. She'll have a hearing test tomorrow. This is s.o.p due to the chemicals she's received. She is scheduled to be admitted 05-19-2003. She'll have a pick(sp) line placed in her upper right arm. She'll need this for the transplant procedure which will follow the chemo. She'll begin chemo 05-20-2003. This will be a 5-day/24-hour a day treatment. After this she'll be moved to the transplant unit 05-27-2003 where she'll remain for 4-6 weeks. Please pray that she will not get very sick during this strong chemo. The doctors are telling us to expect her to get sicker than she's ever been, as this will be the strongest dose she's ever had. We are praying she will not get sick. Please believe with us & join us in this request. This next phase looks to be very difficult. This chemo will "take her to the edge" to use the doctor's own words. Heather's own stem cells will bring her back. Pray God will bless her with a very strong body & that the toll on her will not be as bad as the doctor's predict it can be...Dad.
05 ~ 05 ~ 2003 Heather finished her radiation treatments this morning. She'll wait 10 days & then go in for the worst chemo she's ever had. Right now she's eating & playing normally...Dad.
04 ~ 23 ~ 2003 Heather has done 2 radiation treatments. This is very hard. She must be sedated to lay there for a procedure that lasts 5 minutes. The sedation hangs on for most of the day, making her irritable & woozy. She can't have any food or drink before the procedure. So, she wakes up in the morning, goes straight to the hospital (arrives at 07:30), gets sedated, wakes up hours later, only to be woozy for most of the rest of the day, with interrupted eating habits thrown in the mix. It is also effecting her little tummy. Please pray that this will not take a toll on her little body & that she will get through this doing well...Dad.
04 ~ 18 ~ 2003 The report came back from the pathologist. There was *less* active cancer in the tissue of the remaining mass than was initially suspected. Thank God. This is the kind of news we want to hear. We're still praying for complete healing...Dad.
04 ~ 15 ~ 2003 Heather came home today. She is scheduled to start radiation therapy Monday. This will be out-patient & will last 10 days. She'll continue chemo after that. She's doing well. She's moving around & playing normally, although she's sore around her scar as you would expect. We'll talk to our doctor tomorrow after she meets with a group of doctors to discuss her treatment. There's a possibility they may delay the radiation therapy, but it's not likely. The oncologists, pathologists, & radiologists all have to agree on the plan of action...Dad.
04 ~ 12 ~ 2003 Heather had surgery yesterday to remove the remaining mass in her abdomen. She came through it fine. The doctor found what he believes is active neuroblastoma in the remaining mass. The mass had shrunken down from 7-8/cms to about the size of a walnut. This is not a new mass. It's tissue that had not died as a result of the chemo. Active tissue means active cancer cells are still there, thus the threat of spreading is there, also. This find changes nothing in the treatment plan. Heather will recover & go back in for a very strong chemo treatment. This treatment will make her very sick. It will knock her down longer, too. It will be a five day treatment & it will be stronger than anything she's had before. After this, she'll receive her own stem cells back, so that her body will use her healthy cells to recreate more healthy cells. She's doing well following surgery. She's resting well. She may be able to come home in 5 days. Please, please pray for Heather's Mom. She's taking this news about the active tissue pretty hard. Please lift her up to the Lord as you lift Heather up. It's been a long road so far & it's not getting any easier. God have mercy on my tiny baby girl...Dad.
04 ~ 09 ~ 2003 Heather is in the transplant unit. She's doing the stem cell collection procedure. Surgery is scheduled for Friday April 11th. This could change if her vitals are not stable (up) at the time of surgery. She is uncomfortable with the big needle in her little leg. There was a problem with it bleeding the first day but it's o.k. now. She wants to walk around a lot. I made sure she has her Wiggles tape with her! The nurses from the cancer hospital made her a poster & signed it & brought it over to her room yesterday. God bless you nurse Jennye, Jennifer & all who did this for her. There are no words to express what we feel for you incredible, gifted people at the cancer hospital. God Himself only knows what we've all been through together & are going through together. We need you & could not make it without you. You are laying up treasures in heaven & that's exciting! God will bless you with things beyond your imaginations as a result of your efforts in taking care of these precious children. We love you & we pray for you, too...Dad.
04 ~ 06 ~ 2003 Heather will be at the clinic tomorrow & if her vitals are good she'll be admitted for stem cell collection Tuesday or Wednesday. There are three basic types of stem cell transplants (SCT): autologous, allogeneic, and syngeneic. Where the stem cells come from (the source) determine the type of transplant. Autologous SCT: In this type of transplant, you act as your own donor using stem cells from either your bone marrow or circulating blood. Your stem cells are removed through a process called "harvesting" and then frozen. Before the cells are given back to you, they may be treated with anti-cancer drugs or antibodies to reduce the number of cancerous cells that may be present. This is called purging. The stem cells will be given back to you after you have received high doses of chemotherapy, radiation, or both. Autologous SCT is done twice as often as the other two types of SCTs because there are fewer complications when the donor is the recipient. Allogeneic SCT: Here, the donor, whose tissue type best matches the patient, supplies new, healthy stem cells. The donor is most often a family member, but if you do not have a good match in the family, one can often be found from the general public through a national registry. Syngeneic SCT: This is often an ideal situation because the donor is an identical twin with identical tissue types. Since few people are identical twins, this type of transplant is rare (less than 1%). Her counts have remained low for several weeks. Last week she got blood & platelets twice. She really needs to build up quickly. Pray that she does...Dad.
03 ~ 25 ~ 2003 Chemo treatment 6 is over & Heather came home Sunday afternoon. She seems to be doing well but we'll know for certain after a clinic visit in a day or so. She's not sleeping well but she has a good appetite & she's as active as ever. She's scheduled for surgery 04-08-2003 to remove the remaining mass in her abdomen. The surgeon said it was 1/3 the size it was when she was admitted 11-2002. Heather will be in the hospital at least a week for this procedure. Of course, this planned surgery could be delayed again if her vitals crash & she runs a fever as a result of low platelets, etc. We continue to pray that the doctors will find nothing when they go in...Dad.
03 ~ 20 ~ 2003 Today was a clinic visit & a meeting with a doctor. Heather was admitted for round 6 of chemo. This will be a 2-3 day treatment & then back in a couple of weeks for a push. We met with a doctor who said the tests show the mass in her abdomen is half the size it was when she was diagnosed in November 2002. It's a little bigger than they were speculating but at least we know specifics now. We were hoping it would be gone. We will press on with our prayers for complete healing. We will not stop crying out to God...Dad.
03 ~ 19 ~ 2003 Heather had MRIs & CTs done this week & bone scans last week. We will meet with doctors 03-20-2003 to discuss these tests as well as what the next step will be, which is surgery to remove the remaining mass in her abdomen. Our prayer is that there will be no mass (anywhere) & therefore no need for surgery. The last round of chemo caused Heather's eyebrows & eyelashes to fall out. Her little face still looks as beautiful to us as it ever did...Dad.
03 ~ 11 ~ 2003 Heather was at the clinic 03-10-2003, getting blood. Her counts & platelets are still down but you wouldn't know it from watching her walk & try to talk as she's doing. Her energy level is good & she's eating better than last week. We're praying she stays well while she's in this period of building up...Dad.
02 ~ 26 ~ 2003 Heather came home this Tuesday evening. She never got sick once, which is remarkable considering the 5-day, 24-hour-a-day chemo she received. Thank you God, for hearing the prayers for our precious little girl. Her white & red counts are down but her platelets are high. She doesn't have much of an appetite but she's walking & trying to talk with no slowing down. She's drinking milk, juice & Gatorade. And she's really enjoying that fab four, THE WIGGLES. "Fruit salad....yummie yummie"....I think I like them more than she does. I sing WIGGLES songs all day long. Anyway....there may be a period where she'll "bottom out". This can last a week. It's normal. She's done it before but we'll continue to pray that she'll remain energetic & that she'll get her appetite back quickly. The next step will be scans & MRIs sometime within the next month. Surgery will be scheduled sometime after that. Being the fanatics that we are, we're asking our God, the Great Physician, to do a mighty work in her & as a result, surgery won't be needed, & Heather will have a tesimony of God's healing power...Dad.
02 ~ 19 ~ 2003 Heather's platelets were high enough for her to be admitted this morning. She'll begin round 5 of chemo. This will be a repeat of the first round she received. She'll get chemo for 5 days, 24 hours a day. This round was the one that made her sicker than any other. It's got a nasty drug that's notorious for making patients very sick. This is so hard to see her go back in right now. The last treatment took a toll on her & she took longer to bounce back. Now that she's finally getting stronger & building her little body up, she's back in the hospital for another round & this one's a tough one. Please, please pray that God will touch her tiny little body & keep her from being so sick...Dad.
02 ~ 12 ~ 2003 Heather went to clinic Monday, February 10 & again today, February 12, to check her vitals. Everything is good other than the fact that her platelets are low. She can't be admitted for round 5 of chemo until that comes up. So, we wait. She's doing her best trying to talk & she's picked up the Barney "I love you, you love me" song which she sings...& sings...& sings... She's mimicking the sound of the words pretty closely for an 18-month old. She's eating very well & we're glad for that...Dad.
02 ~ 08 ~ 2003 Heather came home Thursday evening, February 06. Her counts are up (finally) & she's eating. She'll go back to clinic on Monday to be checked out. She'll have round 5 of chemo sometime very soon & that may be determined Monday...Dad.
01 ~ 31 ~ 2003 Heather is in the hospital. She was admitted Thursday morning at 03:00 a.m. She's been running fever for several days & not sleeping well at all. Her appetite is not that good, either. The only comfort she finds is with her Mom. Please lift her Mommy up so that she can have the strength emotionally as well as physically, to deal with this. Heather's counts are down & she's lethargic & fussy, unsettled 90% of the time. Please pray...Dad.
01 ~ 23 ~ 2003 Heather is out of the hospital & back home. She's finished round 4 of chemo. She had a fever for a couple of days & her ears looked a little red, too. She had to get antibiotics for this so they kept her an extra day or two to monitor her fever & vitals. She didn't have much of an appetite this time & she wasn't walking around quite as much as before. She probably didn't feel as perky with her fever. There will be another evaluation of her condition after round 5 of chemo & she'll probably have surgery to remove the remaining mass in her abdomen then. All MRIs & scans indicate the tumors are shrinking & some have disappeared. She had a very long week before she began chemo this time. She was at the hospital 4 times in 4 days doing MRIs/scans & then another day for a clinic visit. She's a trooper & a fighter & she handles this better than any adult I know.....Dad.
01 ~ 09 ~ 2003 Heather had a clinic visit today & the results are good. Her counts are up & her little body is building back up as it should. The doctor said we can stop the shots we have to give her every day & we say: thank You Lord! She's scheduled for more MRI's & scans next week. When we know the results they'll be posted here.....Dad.
01 ~ 02 ~ 2003 Heather was admitted 12.20.2002 for round 3 of chemo. She came home 01.01.2003. She did very well during this treatment. Even though her appetite was not good, she walked & played constantly. She pushed her I.V. pole around the floor of the hospital with tireless energy. She also pushed the plastic wagons around, too. She didn't want to be pulled around in the wagons as much this time; pushing them was much more fun. When she got bored with this, she hopped on the I.V. pole & let us have the honor of pushing her around. Her energy level was very high most of the time. She had one day where she was lethargic, but even on that day she walked a lot & she wasn't droopy all day long. She's gotten used to the nurses & even lifts her shirt for them when they come in to check vitals. She hugs some of them, too. She also made it a point to parade through the nurses station a few times. Their christmas tree fascinated her. She goes back for clinic visits every 3 days, to monitor her counts. Next week she'll more than likely have to have platelettes. The week after chemo is when their bodies show the effects of the drugs. All things considered, she's doing well & we're praying she'll stay healthy through this "build up" period. She's more prone to illness now because of a weakened immune system. We are believing God for her protection.....Dad