History

Sunday, August 14, 2005

Hi, it feels like it has been months since I updated and it has. I have been very busy this summer. We are making the most of it, while it is here. Soon it will be cold, yuck!!

First about Lily, she is doing great. Last week she had all her tests and scans and everything is the same. That is great news :) She had to be fully put under for her MIBG test, which she only gets every 6 months. That test is a three-day test. So we were at Children's 4 days in one week, sounds like last summer for us. This summer is MUCH better. On the 16th will be her year surgery date. It seems like all this happened years ago. I guess time flies when you are having fun?? Nothing we went through was fun.

We were fortunate to go to Chicago for the Children's Neuroblastoma Conference. We met other families who have went through the same thing. The conference was great, the doctors who spoke scared us on some long term effect, but after talking to Lily's doctor we feel pretty sure that since she had much less chemo than most in her category, then she should not have some of those side effects. Only time will tell. I was amazed to see how many parents were stage 4, most of them were high risk, which is a different ball of wax, from what we did at intermediate. We believe that God sent us to the conference to meet others who had it worse than us, if that makes sense. Even though we went through so much, there are many others who have gone through much worse.

Matt and I celebrated our ten-year anniversary on Friday. So we are planning a trip to Mexico next weekend. We are excited to get away for a few nights. This will be our first trip away from Lily. She is such a big girl that she will be fine. The only issue we deal with her is fighting with brother. One minute she loves him the next she is trying to hit or kick him. The terrible two’s are here!!

March 16th 2005

Hi, things have been busy here. Lily had a cat scan on Monday. We have not heard anything from her doctor, so we assume things are fine. He has been out of town, but checks his messages everyday. We actually see him tomorrow for her regular check up.

Lily is so funny at this age. She is so opinionated. I guess this is how girls are?? She is almost potty trained. We still have some days where she decides that she is going to NOT do good. She is really attached to me too. I sometimes feel like I am the chosen one to take her to the potty, blow her nose, and dress her. She seems to always request me. I better enjoy it now, because in 10 years she won't want to be near me.

Wednesday, January 26, 2005

We went to the doctor on Monday for your monthly appoitment. All things are great!! We had no questions, so next month we will NOT have to go back. In March we have another CT scan along with her oncologist. Also, she was taken off her bactrium (antibotic). Her doctor thinks she looks great and told us that she will be fine. He doesn't say things like that unless he is sure. Praise the Lord, we are done with it all. I can handle going to the doctor each month and getting one scan every three months. It is just hard to look back at this time last year we were in Florida having a great time, not knowing that the cancer was spreading in Lily's little body.

On a happier note, don't forget to mark your calendar for Lily's party.
Who knew that babies got cancer? A year ago on Feb 18th, Lily was diagnosed with Neuroblastoma. She has beat cancer and we want to celebrate with all of you who have been praying for her. Please come and invite anybody who wants to meet our "little miracle."

Sunday, Feb 20th
Open House from 2:00-4:00
at Badin High School Cafeteria
571 Hamilton New London Rd in Hamilton

Wednesday, January 19, 2005

Hello, how is everybody doing? We are great!! Lily is running around saying her favorite word "NO" Her speech is coming along so good. She is like a little parrot. These are the times to remember. Alex got a Leapster for Christmas and loves it. We use that as leverage now. We are planning his 5th birthday party. I can't believe that we have a 5 year old.

Here is the info on Lily's party. Please invite family, friends, or whoever has been praying for our little angel.

Who knew that babies got cancer? A year ago on Feb 18th, Lily was diagnosed with Neuroblastoma. She has beat cancer and we want to celebrate with all of you who have been praying for her. Please come and invite anybody who wants to meet our "little miracle."

Sunday, Feb 20th
Open House from 2:00-4:00
at Badin High School Cafeteria
571 Hamilton New London Rd in Hamilton

you can mapquest the directions, it is pretty easy to find.

January 2 Happy New Year!!!

Hi, it has been a busy Christmas!! We have been having lots of friends over during our break. It has been greating entertaining, I feel like Martha Stewart without the prison sentence.

The kids got too many gifts as usual. Lily got a baby doll and stroller set, and she loves it. The doll is almost as big as her. She calls it "baby" Alex is such a big help for me. He usually keeps an eye on Lily. Sometimes he is up to no good and then she follows what he does. She is his shadow.

Lily had a CT scan done of Dec 20th and it turned out good. The liver will always have scars, but no cancer is shown. That was the greatest gift for us. With all the money in the world, it doesn't buy health.

We are planning Lily's cancer free party on Feb 20th, please plan on attending and invite anybody that wants to meet our "little miracle." Lily will be 6 months cancer free.

Have a great and healthy new year!!

Wednesday, October 27, 2004

I just updated the pictures from the wedding. I have been delayed on things lately!! Lily didn't walk down the aisle for the wedding. She was tired and we had been there for hours before for pictures. She looked so cute. Alex is a pro at weddings. We are thinking about renting him out. He has been in three weddings since June.

Lily saw her doctor on Monday. Everything looks good. Her levels are actually normal now! It takes months for things to get back to normal after the chemo hits the immune system. She is still on her antibiotics. I was just excited that she was in the normal range now!!! Since she doesn't have the c-line, they had to draw blood from her arm. They got a vein the first time. The c-line was a blessing, but it can also be a risk for infection.

Trick-or-treating is this weekend. Can you guess what Lily is going to be??? Let's put it this way, Alex is going to be Batman again, so Lily will be Batman too. She is into taking off her clothes and trying to put on her Batman pj's. It is driving me nuts, once I get her dressed for the day, she sees her pj's and wants them back on.

Wednesday, October 20, 2004

I know it has been a week since I updated. Lily had her line removed last Thursday, Oct 14th. She had it in for 250 days. It seems weird to not have it in. The other night I went to give Lily a bath and she reached for her belly to see if her line was covered. It is so exciting. Now, I have a normal child. We can go places and nobody needs to know what her little body has gone through. We go to see her dr on Monday for a check up.

Everything was OK with Lily's heart. Matt took her down for an echocardiogram, and it turned out to be nothing.

We are planning a HUGE party for Lily in Feb 2005. It will be on a Sat probably the 19th. We wanted to wait until the holidays are over and also to give Lily a chance to have another scan done. I don't want to get my hopes up. This date will be our 6 month cancerfree. So everybody plan on coming to her BIG PARTY!!! Invite all your friends, churches, and anybody else who has prayed for our precious baby.

Tuesday, October 12, 2004

We had Lily's MRI done last night. Boy what a night!! Since she has been sedated so much in her short lifetime, her body is resisting sedation. They used the max of sedation, which is 8ml. The most she has ever had has been 5 and it knocked her out for hours. If she had gone to sleep with this, we would have had to reschedule her MRI. We are in a time crunch right now, because her line is scheduled to come out at 6 am on Thursday. She woke in a fit, thrashing around, in a delirious state and crying. She cried hysterically for 2 hours, so they finally sent us home, we figured that she would crash in the car. After about 15 minutes of her crying in the car, she started singing and playing with her feet. She stayed awake the whole way home. So she went to bed at 10 and slept all night. Today, she was still groggy for most of the day.

Her MRI showed improved liver function. The areas are getting lighter and lighter, which means the cancer, is disappearing. Her catecholamines were a little higher in one area hva 37.5 (above normal) vma 18.8 (normal). I was freaked about the slight increase. I left a message for the doctor and he called me back within 5 minutes. He said that her scan showed good results and not to worry about the slight increase. He told me that it could be elevated for several years. They are only concerned about a major jump in the numbers. So all things are good, but there is always a butt. Now, her liver looked enlarged on the scan. So we have to go tomorrow to get an echocardiogram done to make sure nothing is going on. Our dr is not concerned because he thinks all the sedation she had, has played a big role in her enlarged heart. He does not think it is anything, and her heart should be normal tomorrow. You know it can never been smooth sailing. Oh, well, this is nothing compared to all we have gone through. I am so excited about Thursday, it will be my closure. This closure is something I have needed to have.

Wednesday, September 29, 2004

Today we had an unexpected visit to the hospital. We had our appointment for the doctor next Monday, the 4th along with out CAT scan. We have been seeing Lily’s stomach at night sticking out. It was also hard, but then the next morning it was back to normal size. We felt uneasy and called the hospital. We got in along with doing our CAT scan. Luckily there was a cancellation and we managed to get in as long as she didn’t need to be sedated. We were in luck because she was ready for her nap, so she slept through the 5 minute scan. The longest part is the contrast which takes an hour to take effect before the scan. We ran her around the hospital for that hour and then she was ready to sleep. Our doctor went down and looked with the radiologist (impressed that our doctor did that) to see if there was any concern. Everything looked fine, thank you Lord. Her liver is not enlarged, but will always have tumors on it when she is scanned. So when she is 20 her liver will always show these ganglion tumors (non- cancerous). The doctor is not concerned about her stomach enlargement, he says she is gaining weight and all babies have a descended belly. They think that she is probably getting or had a stomach virus, which can make the belly look bigger. She has not acted sick, just a little really stinky diarrhea. We also did a catecholamine test. I was not prepared for this test, because I like to monitor her food intake 48 hours before to make sure they don’t interfere with the test. If the test comes back high, then we will redo it. If it comes back low, then it would have been even lower, if we had monitored her food. The plan now, is to have a final MRI done in two weeks, if all things are well, then the c-line will be removed. I am going to schedule her c-line removal today, which is exciting—something that I have been praying for since Feb 18th. Lily will be able to go swimming. We are planning on taking a weekend away from home that has an indoor pool. Now I get to plan a special place to take Lily. We are also looking at doing a BIG cancer free party for Lily. So everybody who has been praying for Lily needs to come.

Thursday, September 23, 2004

Well, today was the big day for us. We had a long talk with Lily’s doctor about what to do at this point. First of all, there has been some concern about the areas they initially saw on her skull and behind her eyes. We finally got clarification that it was not on her bones, but it showed up on her MIBG scan as something. It was picking up the little bit that was in her bone marrow. Her bone marrow has been clear since May, maybe even before. The second thing was we found out some news that was misinformed by our previous doctor. All of Lily’s markers for NB are good; however the one area we thought was hyperdiploid is not, it is diploid. This changes things just a little, but not her outlook. The studies show that where Lily is now, with the little bit left in her liver, that her chances of it coming back are 10-20r even lower. That is with doing no more chemo. If we did more chemo, the chances would be reduced, but unsure about how much or if any. So we are now scheduling another MRI and catecholamine test next week. He said it would be very unlikely for Lily’s situation to worsen. There is this gray matter that Lily falls in, along with many other kids. This gray matter is the question to watch it or do more chemo? Our doctor is leaning on watching it right now. We were told that there is no right or wrong answer. So if all things go well next week with her scans, we will be looking at removing her c-line. As far as her vaccines, we will have to wait 6 months out from our last chemo to get them. Now, I get to worry about her some kind of crazy thing that she has not been vaccinated for.

As for Lily, she is doing great. Another tooth is popping in. That makes #11. She loves her new purse that I got her for this Christmas, she got it early. She puts her sunglasses in it along with candy and prances all around the house. She started her Kindermusic class today. I was really impressed that she was interacting with the other kids. She especially is into babies right now. There was a 10 week old baby there and she couldn’t stay away from it. So we plan on getting her some dolls stuff for Christmas.

Matt and I celebrated Lily’s good news, by going to Graters in Clifton. It brought back memories of our college years. We love the peanut butter chocolate chunk, hello 5 pounds.

Thank you for all your prayers. We believe that God has a plan for Lily. Our plan is to educate as many people as we can about childhood cancer. It is more common than you think and greatly under funded. If it wasn’t for research, Lily might not be here today. Please check out these wonderful organizations for childhood cancer www.lunchforlife.org
www.cancerfreekids.org

Wednesday, September 22, 2004

Hello, tomorrow is our big day with the dr. I am ready for him, with my list of questions and journal articles about neuroblastoma. So expect an update tomorrow night on her page about our options. I already know that he is going to insist on more chemo. My question to him, is when is enough is enough chemo?? Are we going to do this forever??? I want another catecholamine test done, that is a great indicator for her type of cancer. So I will be bringing a urine sample with me tomorrow to give to him. I am so worried that it is going to come back. How will I ever be able to have a normal life again, always wondering if the cancer is lurking in her little body somewhere? Say a big prayer for us tomorrow.

Wednesday, September 22, 2004

Tuesday, September 14, 2004 Our Batman Fan, she loves her new PJ's

Well here is where things stand. Our dr is out of town until Thursday. So I decided to call another dr at children's that we like so much, but is not our dr. I asked her for her opinion. She has been all over and know a lot of dr's. So she is going to email our dr and try to figure out what the hold up is. So we are hoping to hear from her tomorrow.

As for several other dr's that we have emailed. Two of them are specialist in low to intermediate neuroblastoma. They both agree with Sloan Kettering. I was told that the liver takes a little longer to get out, but that doesn't mean that her cancer is active. Is means that it will go away. One dr said the word "REMISSION" a word that I have been waiting for and now I am scared!! So the question is Lily really done? Is this nightmare behind us or waiting to hit us again 1, 5,10 months or years down the road. How will I ever sleep again? Thinking that everyday is that bad cancer growing inside of her precious body again. That would mean relapse. I hate that word!! We expect to have some final answers by Friday!! Maybe Lily can get her c-line taken out next week. The hospital has been our lifeline for so many months and now its over???

Friday, September 10, 2004

Wow, this week has gone by fast. As you can see, Lily likes markers. She is always wanted to color when she sees Alex coloring.

Well, we have heard nothing from our dr. This is really getting us mad. It has almost been a month since Lily's surgery. We still have NO news on what is going on with the treatment plan. We are waiting on Dr. Shamada's analysis of her liver. Today, Matt is going to hound our dr to call us.

We did speak to Dr. Modak at Sloan Kettering in New York. He has reviewed all her scans and doesn't think that two more rounds of chemo are going to do anything to her liver. He suggests that we wait and see what happens. Remember this type of cancer sometimes goes away on its own. The research shows that whatever is left in Lily's liver will go away. This hospital sees 80 neuroblastoma kids per year. They really know this cancer. So now what?? We have now asked our dr. to call Dr. Modak and talk this out.

Wednesday, September 8, 2004

Sorry it has taken me so long to update. We went to Camp Campbell Guard this weekend. The kids really enjoyed it. Lily got to stay up late. Our life was normal except cleaning her c line each night.

We talked to her doctor on Friday about her status. Her PET scan showed no cancer, so now what?? That is the $100 question. We sent out her info and scans to a doctor at Sloan Kettering, in New York. They see 80 neuroblastoma patients per year. I consider them experts. We hope to have an answer from them tonight. As for our doctor he is waiting for Dr Shamata in LA to give his opinion. We are confused????

As for Lily, her new word is Sponge Bob, she runs around saying it along with Batman. She is so cute right now with her talking and running. This is a cute age, tomorrow she will be 16 months old. We have been doing this for 7 months now.

Wednesday, Sept 1st

Well tomorrow is the PET Scan. We are hoping that is tells us something new?? We contacted the Sloan Kettering hospital in New York. We have talked to them before about Lily. They see 80 neuroblastoma kids per year, so they are experts. We explained the situation to Dr. Modak and he told us if Lily was his patient that they would do nothing. NO chemo, NO accutane?? We are shocked. He knows that it is still in her liver, but he told us that the studies show that the left over cells will turn to non cancerous cells. At this point we are going to over night a copy of all her scans for him to present to his group and they can make a more accurate plan. In the meantime, we are still waiting for our Dr to give us some answers. I know that he does not want to give us false hopes. So, I insist on talking to him on Friday about the results of the PET Scan.

Now, I have enough trouble sleeping with always thinking about Lily. How will I ever be able to sleep (without the help of Ambien) when I know that Lily has cells running around in her liver, maybe just waiting to turn back into our nightmare again. We are so confused and scared more now than ever. With the thought of thinking that we could be done, is what we have been hoping for all along, but with NO cancer left.

As for Lily, she is doing great!!! She runs around the house yelling, "Batman,Batman" And now the new thing is shaking her head NO for everything. It is so funny to see her say NO when I ask her if she loves mommy.

Sunday, August 22, 2004

We got to leave the hospital on Friday, YEAH!!! Lily has done great with her surgery. She actually recovered quicker than they expected. She has been really active since her epidural came out on Thursday night.

We have been trying to adjust to the idea that we cannot predict Lily's agenda for fighting cancer. Hopefully, we will have the full scoop tomorrow. We are insisting that the dr. give us the complete results of her biopsy. It has been a hard few days for both of us. Today at church was really inspiring. It felt like the sermon was geared towards us. After the sermon, the congregation surrounded us and all prayed for Lily!! It was very emotional, and I tear up thinking about it. It is really sad that we had to get to know everybody at the church on these circumstances. It is weird that I finally feel a sense of comfort today. Maybe it was the church prayer or maybe it was a feeling that everything is going to be OK. I don’t know how to explain it ??

We really appreciate all of you who pray daily for Lily. As my sister-in-law, Sue, says, “ God is going to heal her real quick, because he is going to get tired of hearing everybody pray for her, “ I find humor in that :)

Thursday, August 19, 2004 report day

Well, today started out great, because they took out all of Lily's tubes. She has been able to eat and drink. She has been running a low grade fever, but they are not concerned. Right now, it is almost 11 pm and she is running around the hospital room dancing to the comercials. So, I bet you can guess that they are letting us go home tomorrow. Lily has had no pain medicine today. We saw her incision, it is a little over 3 inches, but she appears to have no pain.

That was the good news, now the bad. Lily's liver still shows active cancer cells. Our dr came in around 7:30 to tell us. They are still looking at the slides, because they need a full picture. As it looks now, we will be starting back with chemo #9 in a few weeks. Matt and I are not taking this news too good. We are so confused about this cancer. We don't know how much chemo we will do, maybe two or possibly four. The dr. will let us know next week exactly what to expect. So her cancer free party will not be this fall. Another thing, Lily will not get to swim this summer either.

Thanks to all of you who have been checking her web page. The responses have been great!! I just wish all the prayers would have taken the cancer away now!!

Tuesday, August 17, 2004 surgery day

Well, today was Lily's big day. Her surgery started around 8:00 and the surgeon was done in an hour with her part.Then the oncologist did her part, biopsy the bone marrow. The surgeon was able to go right in and get the main tumor, on the left adrenal gland and the lymph node. They popped right out. They were easier to get out because the chemo does something to the cells, making it easier to remove. Two pieces of her liver were taken out. Her liver was still spotted all over, like before, but her liver will ALWAYS look that way. Her tumor cells look the same as non cancerous cells. The true answer of the liver will be the biopsy. Hopefully, it will be negative!! We might have the answer tomorrow.

Lily has an epidural for pain. She does not appear to be in pain, just tired. She is hooked up to six different tubes. The one that is the hardest is the ng tube in her nose. The tube sucks all the fluids from her stomach. It is not a pretty site!! Once they feel that her intestines are able to have a rest, they will take it out and give her some real food. We hope that tomorrow will be a good day. We probably have a restless night.

Thursday, August 12, our 9 year anniversary

We have been busy this week with scans and more scans. Our week has consisted of Monday til today at the hospital early until late. Lily had 6 different tests inwhich she had to be sedated for half of them.

There is great news. The tumor and the enlarged lymph node continue to shrink. On Tuesday the 17th those bad cancer tumors will be gone. YEAH! Today we got the news that according to her MIBG there is no cancer activity in the liver. We have been waiting for that day. THIS DOES NOT MEAN THAT HER CANCER IS GONE!!! So everybody reading this will think she is done. We will know next week once they biopsy her liver to see if the cells are still active. All scans point to good at this point. We are still not out of the woods yet. I am so excited to hear this news.

Now, the next thing is her surgery on the 17th. The surgeon is pretty sure that she would be able to miss hitting the kidney. She is an excellent surgeon and we have a lot of faith in her skills. Since the tumor has shrunk so much, she will be able to get the tumor out without moving all her organ out. This results in a faster recovery. We are looking at 4-5 days in the hospital if all things go well. I am ready for the surgery. So everybody on Tuesday morning when you wake up say a little prayer for our Lily.

As for Lily she is a wild child!! It is a good thing that she was not the first born, because she would be an only child. She is into everything.

Thursday, July 15, 2004

Today we get to spend five hours at the hospital. Lily needs a blood transfusion, her red blood is low. We found out on Tuesday, and was shocked. They were too busy yesterday to get us in, so we will go today. We were so shocked, now this is her third one. Her counts stay up usually during this last type of chemo.

We are getting everything scheduled for her scan and surgery in August. We know that she will have to have some type of surgery, but we won't know until they do all the scans againl, 9 of them. If things show clear, we are done, if not, then we have to go through 2 more rounds of chemo. We are getting so good at this, I can handle chemo, it is the surgery that scares me.

Right now, Lily has this terrible rash on her bottom. The dr's thought it was a yeast infection, and the medicine is not doing the job. We have switched diapers now, since Huggies has added something new to their diapers, this might be the problem. Who knows???

Lily is walking around like a little girl. It is so sweet to see her go off away from mama!! She is chattering so much in the last few days. She just turned 14 months on the 9th.

6/30/04

Here ares some of our pictures from Niagara Falls, we stayed on the Canadian side. Lily had a lot more hair than she has today. Even with in two weeks it has come out more. Lily had a MRI done on Tuesday. The results still show active neuroblastoma, but it continues to shrink. We are pleased with the results. Her next round is the 5th-7th, with one more round after that at the end of July, and then we will scan her with 9 different tests again. We don't expect her to be done at that time. So our hopes of being done are shattered again. The dr. is still optimistic about the remaining tumors being gone in the next two rounds. We don't know if her main tumor (adrenal gland) will be calcified enough to not do the surgery. Either way, she will have a surgery around the second week of August one to remove the adrenal gland and/or liver biopsy.

Now, the next news, her hearing is becoming an issue. We don't think that there is a problem, but they want another audiogram done. She had fluid behind her ears the last time, so the results were not as good as the first. Well no kidding, she did not have chemo when they first started. The chemo makes her congested, which in turn makes fluid behind her ears. So now they are thinking about sending us to an ENT to see what they think about the fluid. We have NEVER had an ear infection so far. Now, I get something else to worry about along with the hundreds of other things with Lily.

Thank you cancer for allowing our summer to SUCK!!!

Monday, June 7, 2004

Hi, things are busy here, as usual!! Lily has been doing great. We had a few days last week that we think she had a virus, becasue she threw up. However, she is back to eating good again. Her levels have been so good this round. We don't even think she dropped that low this time, because she came back up so quickly. We were pleased to get round #5 done with NO complications, three more to go. Now, we are just getting ready for the next round starting a week from now.

The Relay for Life Walk is this weekend. It will be hard for me to see all those people there who have survived or in Lily's case fighting cancer. It is something that I have to accept, the big work CANCER!! She is going to be other neuroblastoma fighters inspiration to fight!!

Congratulations to our nephew, Chris on his high school graduation. We are so PROUD of you!!!!

Tuesday, June 1, 2004

HI, I hope everybody had a great long weekend. My one goal was to take a nap, and I did only for 20 minutes. We had a busy weekend. First, Alex was invited to a birthday party to see Shrek 2, it was really cute. Then we went to Julie's for a cook-out. Anything at Julie's house is a treat. She is the only person who can invite you for a cook-out and while everybody is waiting for dinner, she is out buying a grill. We did find a blender for the drinks!! Lily especially enjoyed jumping on the trampoline at cousin Julie's house. We had a good time!! Then on Monday, we went to Matt's parents house for dinner.

Now about Lily!!! She has done great. Her appetite is better than it has been!! She usually does not eat good for about 5 days after chemo, but she has been eating a ton of food since she got out of the hospital!! Yeah!! keep eating Lily!!! Lily's levels will be checked today and Friday. So hopefully she will be on the high side when Chris graduates.

3 more days left of work and I will be done :)))))

Wednesday, May 26, 2004

We have had a busy week!! Lily started her 5th round of chemo on Tuesday. She will have it for three days. So tomorrow she will finish up round 5. Now if we can keep her levels good. We switched doctors also. We are really impressed with the guy we picked. He explains things!!!

We are looking at three more rounds of chemo, hoping to be done with chemo at the end of July. Then we will scan her midway after round 6 then again after round 8. We will remove her adrenal gland and biopsy her liver as well after round 8. At that point, we will either go on a high dose of accuatane for several months, go through more chemo, or be done with it all. Now we have a game plan. If only I can hold up through all of this. I don't know if I can get through four more rounds of this. She is so active and it is exhausting dealing with Lily let alone all that we have to do with her c-line. I pray that God gives me the strength to survive this!!

Wednesday, May 19, 2004

Well there is a lot of good news, and some bad!!

Monday started with Lily getting her bone scan done. The results showed no cancer on her hard bones. The first bone scan showed two areas, one behind her eyes the other on the base of her skull. The dr. told us that there was NEVER any in those areas. It was a mistake that is often made because of the shadows. So this was good!! She also had her MRI done which showed that her main tumor (on the adrenal gland) has shrunk in about half. Before it was 3.8 × 2.9 × 2.5 it is now 3.7 × 2.2 × 3.5 CM. It also showed several residual lymph nodes in the area near the tumor about 1.5 cm. Her liver has shrunk significantly by 75%, much better than they expected. The liver looked really good on the scan, but it still showed signs of tumors (this type of chemo tries to not only kill the cells but turn them into ganglion non-benign cells).

Tuesday, we had 5 tests done!! Her echocardiogram showed not damage to the heart!! Her audiogram showed some fluid in her ears resulting in a very mild loss of hearing, but this can change from day to day. So the chemo has probably not affected her hearing. We also had the MIBG injection and her bone marrow biopsy/aspiration. She was delayed big time on this surgery. She was npo all day!! She was grouchy and hungry. We finally got this surgery done at 2:45 which should have been at 1:00. She responded well and we got home by 5:15.They also checked her blood and found that her levels had bottomed out. It was day 11 after chemo this has never happened before. She usually bottoms out on the weekend. Lily did not bottom out this time, so we were shocked to find this out. She needed another blood transfusion, for her hemoglobin. So we knew that on Wed we were going in early for a transfusion. Not a big deal, we have done it before. Our worst nightmare was that Lily got a fever before bed 100.5. We were sent back to the hospital emergency room. We arrived at 9:00, they did her blood counts and they were NORMAL!! NO transfusion needed. The doctor told us that the counts earlier in the day were WRONG!! Lily did not bottom out. That means that she would have had a transfusion that she didn’t need. There was no logical reason for her fever. If her levels were truly low, then the fever was a big deal. We thought that they were low, but NOT!! So they gave her antibiotics and sent us home at 1:15 am. We were exhausted!! We had been at cmh from 8 am-4:15/ 9:00-1:15. We were glad to have this day over. The result of her fever was most likely from her anesthesia. Also we talked to the dr today and it looks like Lily will have to go through 4 more rounds of chemo. This is just off the MRI results. Also her adrenal gland tumor is larger than they like to try removing. It is so close to her kidney that there could be a risk of losing a kidney if we go in now. So her surgery is held off right now. They will probably look at removing it again at the end of June, after 2 more rounds of chemo. So we are scheduled for chemo #5 starting on 5/25.

Wednesday, the day has come for her big MIBG scan. We are sure it will show cancer, based on her MRI results. However, I still keep HOPE that maybe all that they saw will be ganglion cells (which are non cancerous). You never know!! Lily has already surprised them. We are on our way right now, while I type in the car. I am ready for this today. Matt says that he can tackle 4 more rounds, as for me, I don’t think I have the energy for any more chemo. Well we had her blood counts done again and she needs a transfusion. So we are sitting here for 4 hours getting it done. Her MIBG test has been done but no results yet. They need to scan her again tomorrow morning. We are curious about the results. Her bone marrow results are half done and what they see so far is NO CANCER. This is not for sure so we will find out the rest of it tomorrow. I need to write a book about my life at CMH.

Monday, May 17, 2004

Well, Lily had her MRI and Bone scan today. The radiologist took Matt in the back room to show him the slides. Her liver before had more tumor than liver, now there is much more liver matter than tumor. Her liver was considerably smaller. Her bone scan showed nothing on the hard bone, which was the same from before. Her main tumor has shrunk in size. Matt thinks it is about half the size than before. That is great news!! Tomorrow is another big day, audiogram, echocardiogram, bone marrow biopsy, MIBG injection. Keep praying for Lily!!!

Sunday, May 16, 2004

The yard sale is over!!!! Yeah!! Inspite of the rain we did very well in Trenton, thanks to Julie's house. We had a great time digging through all the donated stuff. A special thanks to these people who donated items to sell:

Gina Stitsinger
Julie Jestice
Charlotte Ferguson
Cynthia Robison
Dorothy Cieslak
Tonya Kuckuk
Rob Robison
Rosi Wood
Karen Ferguson
Angela Royalty
Nancy Gersbach
Patti Gray
Deb Pritchard--especially her son's brand name clothes
Scotty Cooper
Maryann Cooper
Matt Cieslak

Thanks to all of you guys who spent your weekend, and I mean Friday, Saturday, and Sunday doing your part for the yard sale. We raised $600 for miscellaneous Cancer funds and almost $100 in candy bar money for the Relay for Life. Next weekend Angela and Julie offered to take the remaining stuff to sell in Middletown. Thank you so much for your help!!

Friday, May 14, 2004

Hi, I just wanted to let all of you know about the newspaper. Lily is featured today in the Middletown Journal. Here is the web page to take a look
http://www.middletownjournal.com/news/newsfd/auto/feed/news/2004/05/14/1084512763.02632.3757.1896.html
just copy and paste.

Make sure to stop at our yard sale in Trenton.

Wednesday, May 12, 2004

Our Relay for Life Team, Saturday Nite Fever Stayin' Alive, (in honor of 1 year-old Cancer Fighter Lily Cieslak) is sponsoring a huge yard sale this weekend. Proceeds benefit the American Cancer Society. Please come and buy, buy, buy! or Help, help, help! OR drop off donations for us to sell. We are setting up Friday night at 7:00 p.m.

Trenton Yard Sale: Saturday May 15
8 A.M. - 4:00 p.m.
Where: Julie Jestice's house
850 Dayspring Court
Trenton, Ohio
Directions: From Route 4
Go North on Wayne-Madison Road.
Ignore Detour sign
Pass Miller Brewing Company
Turn right on Kennel Road
Turn left on Pierson Road follow to it dead ends at Hamiton-Trenton Road
Turn left on Hamilton-Trenton Road
Turn right at light onto Wayne-Madison Road
At light pass Gas station on right and cross over Ste. Rt. 73
Pass Barn and Bunk on left.
Turn right at first street on right Dayspring.
At stop sign go straight, 2nd house on left is 850 Dayspring.)

OR

Please Join Us For A
Pampered Chef Party

To benefit The American Cancer Society
through Relay For Life Team Stayin' Alive

Friday May 21st
7:00 pm
at the home of Dorothy Cieslak
413 Charlberth Drive
Hamilton, Ohio

Please RSVP to Gina at 867-8456 or
Dorothy at 863-8860
Please bring a friend!
Just let us know if you are coming so we have enough seating and great food!

If you cannot attend you can see anyone on the Relay Team to place an order in advance. All orders must be in by May 21st.

Please Support this fund raiser-all proceeds go directly to the American Cancer Society.

Our Consultant is Lisa Rankey 737-8067

Monday, May 10, 2004

Hi, things have been busy here!! Alex has a fever of 101 and now we are freaked about Lily getting whatever Alex has. That is the only symptom he has!! Lily's counts are on the way down. She is scheduled for a bunch of test next week.

Monday, May 17 MRI and Bone Scan
Tuesday, May 18 MIBG injection, Audiogram, Echocardiogram,
Bone marrow aspiration
Wednesday, May 19 MIBG scan and meeting with Dr and Surgeon

We are going to be busy, but we will know on Wednesday if Lily still has cancer. These tests are going to be big. I am excited, but also scared to know the truth.

Thanks to all of you who donated to Cancer Free Kids for Lily's birthday party. The raised money of $640 will go to the oncology department at CMHS.

We need lots of prayers for next week!!!

Tuesday, May 4, 2004

Hi, Lily celebrated her 1st birthday on Sunday. Her official day is on the 9th. She starts her chemo #4 on Wed, Thurs, and Friday. Then we wait for two weeks and then start all the tests. I am excited about getting them done, but also scared to find out the results. In my mind, I don't want to be disappointed. I changed the pictures, so take a look!!

Friday, April 30, 2004

Good morning!!! It has been over a week since I updated. You can all yell at me later! Lily has done well with round #3, she is amazing. She is able to stand on her own now. It is so scary seeing her cruising around.

We are celebrating Lily's 1st birthday on Sunday. In lieu of gifts we are asking for donations to the Cancer Free Kids organization. All the money goes to our local Children's Hospital for the cancer research. We are excited about planning Lily's cancer free party. We cannot tell you when it will be, my greatest wish would be the end of May, but my hopes are not up for that. So we are looking at August. Unless, I email everybody about great news on the week of May 17th. Lily will have 10 different tests done, 8 she will sedated. Then we will have her big, aggressive surgery to remove the adreanal gland. Keep her in your prayers.

Wednesday, April 21, 2004

Today, Lily had her counts done. All are pretty good except her hemaglobin is low 9.7. when it is 8.0 we have to have a transfusion. So we will be surprised if she makes it through this time without a transfusion.

You would never know that Lily is sick. She is into everything. Today she was standing by herself without support. She did it for a long time. She did fall in the kitchen and scraped her head on the inside hinge of the cabinet. She has about a 3 inches scrape on her head. Thank the Lord she did not hold her breathe. She has done this before, I guess trying to pull an Alex on us.

Saturday, April 17, 2004

We completed the 3rd round of chemo on Friday. We started her GCSF shots today. She is getting pretty good at getting poked. We gave her a bath tonight and her dressing got wet. This resulted in immediately changing her dressing, which is a 30 minute sterile procedure. She gets these dressing changes every week, which we did on Wednesday. We did not expect to have to do another one this soon, but her Aquaguard had a slight bubble that we missed and water got near her line. Needless to say we were not happy. Just another headache.

My positive attitude has diminished thanks to Dr. Delaat. She informed us on Wed (right before we started chemo) that for us NOT to expect Lily to be done in May. We have had NO tests to prove this only her experience with others. She told us that her liver is so ate up with the cancer that finishing next month would never happen. Thinking that we only had one more round to go, kept me positive, now I feel as bad as I did on Feb 18th. My heart is aching and I am so angry again. That means our summer vacation will be at CMH, no swimming for Lily, and most likely Lily will have a harder time getting her levels back up.

Lily's stomach has shrunk in size and she is eating well. We will find out the results of her catecholamine (24 hr urine test that detects neuroblastoma) by Tuesday. So that should be a good indication of how well the chemo is working. It is hard to be positive right now.

Tuesday, April 13, 2004

I know most of you have been telling me to update the web page. I wanted to wait until I got the Easter pictures done. Matt actually left the digital camera at his parent’s house, so blame him for the delay.

Anyway, Lily starts chemo round #3 tomorrow. We are prepared for a thumb up :) We need to hydrate her as much as possible, so on the way to Children's we will be making her drink her juice. She has to be well hydrated before they start her first day of chemo because it can affect her kidneys. We check in at 9:30 and will probably start before 6:00, it is a long process. Keep your fingers crossed for no transfusions. We will know tomorrow.

Keep her in your prayers. Thanks to all of you that sign the guest book. It means a lot to us to read your comments. We know that all of you are praying for her!! Thanks Gina and Danielle for taking care of Alex this week

Monday, April 5, 2004

Great news!!! Lily numbers are HIGH!! Her ANC 21,150 that is super high, platelets 92K, Hemoglobin 11.9, and white blood count 37.5, (normal is 6-15) We are so excited about her high levels. She can now be around people. So we had many visitors tonight to see our little miracle. Her nose is stil snotty, it has been for three weeks now. The dr is not concerned about her nose, because she has no other symptoms.

Lily is so verbal right now. Her vocabulary is amazing, she can say 6 words. In the past three days we have a walking monster on our hands. She is a cruising girl, on the move. I am not thrilled to see her cruising, because I am afraid of her falling and hurting herself.

Sunday, April 4, 2004

Hi, I hope everybody is getting adjusted to the time change. It always seems weird when it changes.

Lily's ANC was 120 on Friday, which is not good. The dr. thought that Friday was the lowest day (day 9 after chemo) so that is why it is low. The rest of her levels are great. We will see what tomorrow brings us with her levels. When her ANC is low she is more likely to get a fever, resulting in a minimum 2 day stay at the hospital. We have not experienced this yet. I have been blessed that both of my children have NEVER had a fever. So I really don't know how to react. We are not allowed to give her Tylenol or try to mask the symptoms of her fever. We must rush to the hospital. We are scheduled for round 3 on April 14th. I hope the light at the end of the tunnel is approaching us. We are counting on her being DONE with everything at the end of May. That is the only thing that is keeping me going right now, is the end of MAY!!! I don't know and even want to think about how my life will shatter if we have to continue for four more months. I am NOT thinking that way. I haven’t accepted four more months yet

Thursday, April 1, 2004

Happy April Fools Day!! I wish the word CANCER was a fool, but it is reality for many people in the world. Lily is doing great! Her levels were the lowest yesterday, but they never bottomed out completely. Her platelets are 279, hemeglobin 11.5 (that is the highest they have ever been, thanks to the transfusion), ANC 1250, and white blood count 5. This number floors me. It has never been this low and we are giving her the GCSF to keep it high. They are not concerned about this number at all. I even called them today and asked them to recheck it. It was right. Now tomorrow we will got back to the hospital just for a check up and blood work. If all things go well, we might be able to stop the shots. Keep her in your prayers.

Monday, March 29, 2004

I guess no news is good news!!! Lily has done very well. I hate to brag, because as soon as I do, then the bomb will drop. That is how we feel everyday for two weeks after chemo. Just waiting for her to get sick, then once the third week hits the chemo is out of her body. That is when we take her back in for the next round. Her little body has taken it well. She was up partyin' until 9:00 last night. She is our party girl trying to walk around. I am fearful of her walking right now. She seems so little.

Saturday, March 27, 2004

Today is just beginning for Lily. So far so good. She slept most of yesterday!! She is usually tired from chemo at first!! We are planning on playing outside today since the weather is warmer. She loves to be pulled in her wagon around the yard.

Friday, March 26, 2004

We are two rounds down and two more to go!!! Lily made it through this one without being sick. She is on medicine to keep her nausea down. We can stop the medicine today as long as she can tolerate food. She loves mac and cheese. So needless to say she is eating it at least once a day. We started her GCSF shots last night. It is hard to see her getting poked everyday, but we know that this medicine is going to make her white blood count stay up. She is also getting her mouth swabbing done (3 X’s per day). She does not tolerate this very well. Lily is so funny, she is into everything. Keep her in your prayers. I will be updating her pictures this weekend.

Wednesday, March 24, 2004

Today we starting round 2 of the chemo process. She will also be getting a blood transfusion tonight while she is sleeping. Her red blood count has not gone back up, so now they will pump her count up so that it can bottom out again. This process at the hospital is so slow, it drives us crazy. We have been here since 9:30 and it is past three and we are still waiting on her chemo. The chemo will only take an hour but the transfusion will take 3-4 hours. We are sad that our baby has to have a transfusion already. Keep her in your prayers.

Friday, March 19, 2004

Hi, Lily is doing great. She has a running nose with a lot of snot, but she is strong. We are waiting for Wednesday to start round two. I pray that her little body can handle it.

On June 11th from 6:00 pm til Sat noon is the Relay for Life Walk in Fairfield. We are trying to get a team set up in honor of Lily. We must have a walker at all times during the 18 hour walk. You do not need to stay there the whole time. We would schedule your time for walking and then you could leave. We will have a couple of tents there for people to sleep. This should be a lot of fun and would appreciate getting family and friends involved. If you would like to support the American Cancer Society and Lily please email me if you will be able to attend. This event is very important to us.

Wednesday, March 17, 2004

Lily has been doing great the last few days. She has stopped her GCSF shots now that her white blood count is up. We are taking her for a check up today at the hospital. They will measure her to see if her belly has gone down. I think it has, but I am not getting my hopes up. We are really surprised how well she has done with her first round. We start the next round on the 24th a week from today. Keep Lily in your prayers.

Sunday, March 14, 2004 12:10

Today, Lily is doing great. She has a runny nose and a few sneezes. She is eating better today!!! She gets her blood done tomorrow, so if her white blood count is still good, then we can stop the GCSF shots until her next round of chemo. We just wish that we did not have to swab her mouth out, she hates it. It makes her gag and has thrown-up from the swabbing. I got the information on the Relay for Life Walk in June. I am OK donating money, volunteering my time, and participating. It hit me the hardest when I read that the cancer patients and survivors get to do the first lap. I hate the thought of seeing one of my kids doing the first lap, that is what hurts right now. I guess it is the acceptance that she is a CANCER patient. I still don't know if I want to accept that word yet. The Daddy, Mommy, Alex and Lily will all be involved in the Relay for Life Walk. So all our family and friends, Lily will be asking you to participate too. So get out your walking shoes.

Saturday, March 13, 2004

Lily is helping me type this morning. She is acting like a normal 10 month old, into everything. She has been feeling great today. Eating whatever she can get into. She especially likes to crawl to the fridge and eat the magnets. It is the 10th day since she started chemo and we have had no reactions yet. I feel like everyday, I am waiting for the bomb to drop. I wake up wondering if today will be the day that she gets an infection and we are rushed back to the hospital. So far so good. I count the days down to the next chemo, less than two weeks. The chemo is working, we can tell by her not being so sweaty when she sleeps. Actually, she hasn't been sweating at all, YEAH!! Keep her in your prayers.

Friday, March 12, 2004 7:55 PM CST

Today has been good new. We were expecting to go to the hospital today for a blood transfusion for her red blood cells. Her blood tests today were really good. Her red blood was a 8.6 and anything 8.0 and below requires a transfusion. We are glad to spend a night at home. Lily looks great and has been acting like a normal 10 month old.

Tuesday, February 24, 2004

It has been a week since our diagnosis. It is not any easier. I keep thinking this is a bad dream and I am going to wake up. Lily looks great; you would never know that she is sick. The only symptoms were her stomach sticking out (we thought it was a milk belly) and her sweating when she sleeps.

Monday, February 23, 2004

Today is scheduled for an echocardiogram; she is sedated again for this test. She also got her injection of MIBG nuclear medicine. This is the test that we have been waiting for since Wednesday. They only do this test one time per week. The MIBG is sent from Canada, very expensive for the injection. Tomorrow we will to the scan.

Sunday, February 22, 2004

An early day at the hospital for a GVR to monitor her kidney function this will take four hours. She had blood taken every 30 minutes from her c line. It does not want to give blood, which is not good. An injection was given in her foot; I guess it is the radiation for the test. Also a bone scan was done today. YEAH no cancer on her hard part of the bones. She was sedated again. A long day today, I am glad it is over.

Saturday, February 21, 2004

A normal day so far until home health gets here to help us clean and flush her c line. This c line is a big deal. It has to be cleaned for a three-minute scrub along with flushing each day with heparin (to keep her line from clotting). We are still in shock.

Friday, February 20, 2004

The results from the bone marrow biopsy are back, with trace amounts in her marrow. That is great, just more places in her little body. The catheter was removed and we were trained on flushing her c line. We get to go home today. I have not been home since Wednesday. There was plenty of family to greet us, but this greeting from the hospital was not as pleasant as the day we brought her home from the hospital. We are angry and tired today.

Thursday, February 19, 2004

Everyday the doctors do rounds in the morning, in which we can participate. There are a number of specialist and residents (10-12 people) that discuss our Lily. Her surgery is scheduled today at 1:30 they will biopsy her liver, bone marrow biopsy and take a look at the tumor. Her central line (c line) will be put in today. A catheter was put in for a urinalysis test for 24 hours. She did well being put to sleep. It was hard to see our little angel being put to sleep. This c line will keep her from being poked to get blood. This line will be used to draw blood and give her chemo. Matt had a hard day today. The cancer has spread more than we thought.

Thursday, Feb 19, 2004

We met with our main Dr. today. She is one of the best, they say. We are having a CT scan done today at 5:00 to see if there is cancer in her lungs and heart. We are still checked in the hospital. Matt went home last night and brought me some clothes. He did a great job at packing our clothes. They found areas in her lymph nodes around her heart and in her stomach area. She was not sedated for the CT scan, YEAH!! We are still in shock and very sad. The Dr.'s didn't tell us much, because they say they don't know anything until they do the biopsies, that is tomorrow.

Wednesday , Feb 18, 2004

We were sent the next day to Children's Hospital to see a liver specialist about her enlarged liver. We were sent for an ultrasound, then sent back up to see the Dr. They cleared the office and then told us that Lily had cancer. They saw a mass on her left adrenal gland, which spread to her liver (that is why her liver is so large). We were sent that night to get a MRI and admitted in the hospital. They told us that they were sure that it was neuroblastoma. A type of childhood cancer that is seen in only 8f kids with cancer. This was the worst day of our lives. At the beginning of the day we thought that we were going to see the Dr. and get some medicine to make her liver better, not the word CANCER.

Tuesday, February 17, 2004

Today was Lily's 9 month check up. I actually did not have much to say to the Dr. this time. I took her in December for her six month and had a ton of questions, but this time I was only concerned about her belly button. We had noticed that her belly button had started sticking out. The Dr. felt her belly and noticed that her liver was enlarged. We were sent for blood work and a chest x-ray that day and got the results back. Her blood work was all good, however her liver was not functioning like it should. Her chest x-ray was clear. We were sent the next day to Children's Hospital to see a liver specialist about her enlarged liver. We were sent for an ultrasound, then sent back up to see the Dr. They cleared the office and then told us that Lily had cancer. They saw a mass on her left adrenal gland, which spread to her liver (that is why her liver is so large). We were sent that night to get a MRI and admitted in the hospital. They told us that they were sure that it was neuroblastoma. A type of childhood cancer that is seen in only 8% of kids with cancer. This was the worst day of our lives. At the beginning of the day we thought that we were going to see the Dr. and get some medicine to make her liver better, not the word CANCER.

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