Journal History

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Friday, November 19, 2010 8:47 AM CST

We had an appointment this past Tuesday with her oncologist and she is good to go!! All bloodwork and heart tests came back and she is healthy as a horse. It is hard to think that 8 years ago, we were at Childrens getting chemotherapy. It was nice to see some of the same nurses still work in the oncology department. The hospital has expanded its oncology wing, it is so nice and roomy.

We have been so blessed. She is in 7th grade now, plays soccer, and does cheerleading. She is getting tall, at 5'4" tall and she is active. I could not ask for more. She is a good kid, and I thank God every day that she is still here. Even when she drives me nuts with doing homework, cleaning her room... I am forever grateful that I have HER!

My hope for anyone out there, that is going through this with their child, that they find strength in God. He is there for you.

Chrissy

Thursday, June 10, 2010 4:41 PM CDT

Wow the years have flown by. I saw that an old friend Alicia left a note... will call you.

Not sure if anyone ever looks here anymore. It has been almost 8 years since Alison was diagnosed. It seems like an eternity. She has been healthy. She is going into 7th grade next year. She is growing up so fast. The boys are getting big too. Drew is 7 and Trevor is 4.

I will post some pictures. If you are reading this because your child has cancer, know that there is hope. Stay positive. Pray often.

Love,
Chrissy

Tuesday, August 5, 2008 3:19 PM CST

Just want to update how Alison is doing. She is doing great! She seems to be the one who doesn't get sick when the rest of the family does. She is getting tall and growing fast. She is a typical 9 year old. We are so blessed to have her.

She is getting ready to enter the fifth grade. She is not too excited about school starting again, she likes to sleep in. I, however, am excited for school to start back up. Drew will be in kindergarten this year, so I will just have Trevor home with me.

The kids are enjoying their summer. We have been to visit my sister in Gloucester, MA for a few weeks. I love it there. We have been to Busch Gardens a few times. It has been a great summer.

I will post some new pictures of the kids. God bless everyone and may you all be healthy!

Chrissy

p.s. thanks for signing the guestbook. I hope that this can help someone else who has a loved one going through cancer. There is hope.

Monday, May 14, 2007 5:28 PM CDT

Hello Everyone,

Alison is still doing great, she is now over four years out of treatment. She is growing up so fast. She is doing well in school.

We still continue to get ultrasound, x-rays and bloodwork. We are actually scheduled this June. So far everything has been great.

We did go on our wish trip to Give Kids the World last November. This place was awesome. The kids enjoyed it so much, it was really hard to leave. The Make a Wish foundation put it all together for us and it was so very touching. It is a really great organization, very giving.

Thank you all for praying for Alison, God bless.

Chrissy

Wednesday, November 9, 2005

Hello Everyone,

Alison is doing very well, her scans in August turned out fine, no changes. Time sure has flown by. It will be three years off treatment in February. Sometimes it seems like it was only yesterday. The doctors tell us that she is considered cured... she doesn't need any more scans... I will probably opt for at least yearly scans.

Alison is doing okay in school. She doesn't like getting up early in the morning, she is definitely a night owl. She is making friends, which she seemed to have a problem with last year.

Drew is getting big and he is finally starting to talk!! He is definitely all boy. Loves to jump and run into things. I am also pregnant again. We are expecting in February.

Thank you all for your prayers and support throughout Alisons treatment. They really helped and I cannot thank you all enough.

God Bless,
Chrissy

March 30, 2005

Hello Everyone,

It seems like forever since I signed on... pretty much has been. I don't have email anymore or access unless I am at my parents house. I went through a little bit of a funk the past year. I saw that some kids became angels. It really bothered me. I didn't want to deal with it. I didn't know what to say to the families. How do you say to a family that has lost a child that you are sorry. I can't even imagine what I would want to hear in that situation. I think about the presents at Christmas that were never given, the pink balloons floating up to the sky, Elton Johns "Your Song". I felt if I wasn't looking for it, it wouldn't be there. Even though I know that it was (gee does that make sense???).

It also seemed like every time that I got online there was another child diagnosed. It seems so never ending. It is truly unfair for a child to go through what these children go through.

I continue to pray for these children and their families. Having a child go through cancer treatment or even just diagnosis is something I don't wish on anyone.

I have eased up a little on worrying so much whenever Alison sneezes. A fever doesn't freak me out anymore. But there will always be some degree of worry about her.

Alison is doing great. She had a scan in February (her two year mark after treatment) which there was no change (still have those spots on her lungs which haven't changed and they are not concerned about). She will have another scan in August. The doctors do consider her cured, but the fact that her histology was unfavorable they will continue to do scans, every 6 months now, maybe going to every year after next February.

She is growing like a weed and is doing well in school.

Drew is getting big also. He just turned two in the beginning of March.

I will try to update more often... try...

God bless.

Chrissy

January 29, 2004

Hello All,

Alison is doing fine. I talked to her oncologist and she said that they are confident that the "shadow" in her lung is just some fluid/mucus from a cough or cold. They said that we don't need to get the scans until April. We will see them on the 17th of February for a regular visit (blood & urine) and I will bring up my concern with them then. They tell us that reoccurances would show up as dots or spots instead of a line. Part of me wants to have faith in the doctors, after all they know so much more than me. Another part of me is freaking out...

Well, she seems to be doing fine, back to her normal self. She is enjoying school. Drew is doing fine, he seems to have a bit of a temper though... nothing I can't handle. Mike is going to be in Hawaii in February for work (how nice!!). My sister in law is doing fine, she just finished her chemo and her scans are clear (for Hodgkins lymphoma). My mother is doing great also, her scans are clear! Thank you all for your prayers, I really do appreciate them.

If you would, say a special prayer for all those children and their families who are going through cancer treatment or for those who have lost a child to cancer, which to me is the worst thing any parent could ever go through.

God bless you.

Chrissy

January 11, 2004

Hi All,

Alison is doing well. She had some red blood cells and white blood cells in her urine sample during Christmas vacation. So we redid the urine culture/analysis. It showed just trace amounts of blood (no RBC/WBCs) which has been the norm for her since the removal of her tumor.

We did do a CT scan on the 9th just because of the urine results from earlier. The scan CT scan came back with something showing in her left lower lung. They say that is does not appear to be related to the wilms or any mastisis. It appears to be some fluid/mucous from a cold. The geometry of the area in her lung is linear, it does not appear to be "dots", which is how they tell us that it would appear if there was a cancer.

I am optimistic... I am still worried, but they will redo the scan within the next 3-4 weeks. She did have a cold/cough during the Christmas break, which they said could explain the area in the lung.

I will try to update again soon.

Chrissy

Tuesday, November 11, 2003

Hello All,

Alison is doing well. Her scans came back fine. She still has some blood showing up in her urine, which they tell us is nothing for us to be concerned about. They just told us to keep her well hydrated and if she runs a fever to take her to the doctors for a urine culture.

She is enjoying school. She is doing very well with her letters and numbers. She is making friends too, which I was concerned about since she hasn't really spent much time with other children prior to school (other than relatives).

Everyone has been so great about praying for Alison, I would like to ask that you all say a prayer for a adorable little boy named Cameron and his family. His website is www.caringbridge.com/mt/my.little.cam.

Also for my sister in law Susane, she is going through chemotherapy for Hodgkins Lymphoma, she is currently neutropenic.

Thank you all. I have posted some pictures (these aren't new ones... just some that I came across that I thought were really cute.).

Chrissy

October 11, 2003

Hi Everyone,

I am sorry that I haven't written in a LONG time. I no longer have email/network service. So I will try to update every time I get a chance. I want to thank all of you who have sent notes to the website, it really meant a lot to me. Not a day goes by that I don't think of and pray for many of you.

Alison is doing great. She started kindergarden at the end of August. She is loving it. Her teacher is wonderful. She is growing up so fast.

Alison has her next scan on October 28th. Her scans so far have been great. She still continues to show trace amounts of blood in her urine, which they say is nothing to worry about. What... me worry??

Chrissy

May 17, 2003

Hi Everyone,

Things have been going very well. Alison had a great time at Disney World. She really enjoyed the virtual reality rides. The weather was beautiful. We had an absolute blast. I have posted some pictures from our trip.

Alison goes in for her monthly doctors appointment on Tuesday, the 20th. They will check her blood and hopefully do another urine sample and culture.

Alison hair is really coming in. She looks so beautiful.

We found a tick on her the other night. It is a lone star tick, which carries diseases. The oncologist said that we don't have to worry about putting her on an antibiotic, but if she comes down with any symptoms to bring her right in. I am so scared that she could develop Lyme disease or some other disease. I know that the probabability is slim, but the chance is there.

I will write again soon. Thanks for visiting!!!

Chrissy

April 23, 2003

Hello All,

Things are going fairly well. Alison had a urinalysis last week that showed traces of blood in her urine during our monthly visit. The doctors said that it was probably due to her being a little dehydrated. So we did another test the following day. This time they did a urinalysis and a culture which both came back negative for blood. We decided to do another test the following week, two days ago. This time it showed that she had some blood in her urine again. So the oncologist wanted to do a cat scan.

We did the cat scan yesterday which came back negative. We were so relieved. The nurse practitioner called this evening and said that they had done another urine culture which came back as positive for E coli, which is a common bacteria for a UTI. So she is now on an antibiotic for 10 days.

Other than that, everything is going very well. We are getting ready to go to Disneyland on Saturday. Alison is so excited. I think that she is most excited about spending 7 days with her Daddy.

Things have been very busy and stressful these past few weeks. Getting adjusted to caring for another child has taken some getting used to. Drew is doing very well and he is getting so big. He eats all the time it seems. Still getting up every few hours for a bottle... i.e. not getting much sleep.

I will post some new pictures. God Bless.

Chrissy

April 1, 2003

Hello All,

Alison is doing great. Her next oncologist appointment is on the 15th. I expect everything to go well. She has been feeling good.

We have been enjoying going places with her. Since she was cooped up for so long, she really appreciates seeing people. We went to the circus on Sunday, she seemed to enjoy the cotton candy. The show itself kind of bored her, she was ready to leave after about an hour.

I have posted some new pictures that I just had developed. I will write again soon.

God bless!
Chrissy

March 21, 2003

Hi all,

Alison is doing great. She is feeling good and has an amazing amount of energy. I just got some pictures back that I took back at Christmas time (I would post them but my computer is on the fritz and I am updating from my parents computer). What a difference. She looks so different. The dark circles are gone, the drawn out face... I didn't realize that she looked that way until I saw those pictures and was able to compare it to how she looks now.

Alison had her doctors appointment last Tuesday, everything went well. The doctors informed us that she will be unable to get her 4 year old immunizations until August. She will be unable to get her measles immunization until February of next year. They say that the immunizations could make her sick, her system is just not ready for them yet. We don't see the oncologists again until the 15th of April.

We also took Alison and Drew to get some picture taken at Sears the other night. I can remember how she would hide and scream whenever she saw a camera. Now she just hams it up... I love it.

She has been such a good helper with her little brother. She is so caring and loving, it just melts my heart. God bless her.

We signed her up for kindergarten the other day. She will turn 5 on November the 22nd, so she will be one of the younger kids in the class. I think that she is ready for it.

Will try to update again soon. I will post some pictures once I get my computer up and running.

Again... Thanks for all your prayers!!

Chrissy

March 15, 2003

Hello All,

Alison is doing great. She did have a slight cold, basically just a runny nose and a morning cough, but she is doing well. She is getting used to being a big sister. She is such a loving child, she has fallen right into it. When Drew is upset (which he is if he is wet, hungry or tired, etc... you know the drill) she talks to him calmly telling him it is okay. It just warms my heart.

Alison's hair is growing back. It is so thick on the top of her head. She looks so beautiful.

I will periodically update her website, probably on a weekly basis. I will also update the pictures soon.

Alison does have an oncologists appointment on Tuesday, which is our first of many monthly visits. I think that they will just check her blood and do a basic check of her stomach, lungs, etc. Now that her broviac is removed, she will have to get a needle, which is the downside of not having a broviac... and that is the ONLY downside.

Thanks to everyone for their continued support and prayers for Alison.

Chrissy

March 9, 2003

Hi All,

Alison is getting her broviac removed tomorrow. She does have a slight runny nose, not too bad, so hopefully they will still do the surgery. Her hair is coming in, slowly but surely, she is getting excited about barrettes. This coming from a little girl who had a fit when I tried to put barrettes/pony tails in her hair 7 months ago. Her spirit is great.

We have a new addition to our family. Alison's little brother Andrew was born on March the 5th at 5:30 p.m. He weighed in at a whopping 8 lbs 14 oz., 21 inches long. He is healthy and doing great. I have posted some pictures of he and Alison.

I will keep Alison's website updated as to how she is doing. I want to thank everyone for all their support and prayers. They mean more to me than anything. I am so thankful for all my friends and family. Thank you so much.

Chrissy

February 28, 2003

Hi All,

I have GREAT NEWS!! Alison's scans are CLEAR. She is to get her port removed March 10th. Thank you for all your prayers! I really do appreciate them.

Alison is doing great. Her counts are not quite "normal". They are good, good enough for her port to be removed and good enough to fight an infection. She will still have to see the oncologists every month and get CT scans every three months. Our next goal is to be cancer free for at least 2 years (from what I understand) to be considered cured of this cancer.

Thank you so much everyone for all your thoughts and prayers. God bless!

Chrissy

February 22, 2003

Hi All,

Things are going well. Alison is doing fine. She hasn't had any fevers. We have no idea what her blood counts are. She will get her blood drawn on Wednesday. We have an appointment with the surgeon on Tuesday the 25th to talk about getting her broviac port removed. They like to meet with the patient before they do the surgery. Alison gets her CAT scan on Thursday the 27th. If all is well and clear, then we set up an appointment to get the port removed.

I do feel some relief that her chemotherapy is finished. I am still nervous, which will always be the case, I am sure. But I feel relief that she will not have to have those harsh chemicals entering her body every few weeks.

Thank you all for your prayers!! I can't thank you enough. Thank you also for signing her guestbook, letting us know that you are thinking about her. God bless.

Chrissy

February 19, 2003

Alison has finished with her chemotherapy. Her last dose was yesterday. She has handled this dose of Doxirubicin much better than she has in the past. The nausea has already subsided.

I posted earlier that her scans are on the 28th. They are going to be on the 27th of February instead, that is a Thursday. Please say a prayer that her scans are clear. So we should know something on the 28th. I am a little anxious, but I do think that everything will be fine and that her scans will be clear. I really have to think that way or I will lose it.

If all goes well, she will have her port removed about a week or possibly two after her scans. It depends on if we can get an appt. with a surgeon. So hopefully by mid-March her port will be gone.

She does not have to have her GCSF shots this week (or hopefully ever again). She will get her blood checked next Thursday. Her ANC counts yesterday were in the 1600's. If she does, by chance, get a fever, we will still have to take her to the ER to get blood drawn to see if she is neutropenic. The doctors don't expect her counts to go that low.

Thank you all for the prayers and thoughts and gifts for Alison. We really do appreciate them. Thanks for being there for us.

Chrissy

February 14, 2003

Happy Valentines Day!

Alison is doing great. Her blood counts are high and she is feeling good. Her cough is gone. We are ready for our last dose on Tuesday. That pretty much sums it up.

Thank you everyone for their support, prayers and thoughts. It has been a long six months. Thanks for being there for us.

Chrissy
p.s. Happy Birthday Jim and Van

February 11, 2003

We went to Children's this morning and the oncologist listened to Alison's lungs. They sound very clear. I was so relieved to hear that. I was really worried that something else was going on. We are still on schedule for our last dose of Doxirubicin on Tuesday, the 18th.

Thank you all for your prayers!!

Chrissy

February 10, 2003

We had our blood draw today and her ANC is back up! We still need to continue her GCSF shots for now. She still has that cough. I spoke to the nurse who does the blood draws and she listened to Alison lungs. She said that her lower right lung sounded different. Mentioned the word ronchi but no wheezing and no rails (not sure what all of that means...). I spoke to the nurse at Children's and she talked to the oncologist who said that she wanted Alison to be seen tomorrow, just to be safe. So we are going to Children's tomorrow to have Alison looked over.

I am very nervous about this. More than likely it is nothing and I pray that it is nothing more than a cold. Just I know that in the back of my mind it could be serious. I am actually sick about the whole thing. Even if they tell me that she is okay and her lungs look clear, I know that I will still be worried for the future. I hate this so much. I feel so helpless.

I will write after I talk to the oncologist to let you know what they say. Thanks for your prayers.

Chrissy

February 9, 2003

Alison did run a low grade fever yesterday. I talked to the oncologist who said that since she has this cough and a low grade fever, if she has another fever or her cough gets worse to bring her in. Well she hasn't had another fever, so we are at home. The cough started out as a dry cough in the morning, by late afternoon, it sounded a little more productive. I am still concerned about this cough. But it is probably nothing more than a common cough.

She will get a blood draw tomorrow. I am curious to see how her counts are considering she is fighting some kind of virus. I will post them once I know.

She has been playing with her Dad all day long, I have been excluded. She seems to be in good spirits. Thank you for all the prayers.

Chrissy
p.s. Happy Birthday Leslie

February 8, 2003

Alison has developed a cough. She awoke this morning and coughed up some phlegm, has had a slight cough all day, no other symptoms (slight temperature, not considered low grade fever). So hopefully she just has a cold. The fact that Mike has a slight runny nose makes me think that is all that it is. But I can't get out of my head that this cough could indicate a metastasis. It more than likely is nothing but a cold, but in the back of my head I am scared.

We are almost finished with her chemotherapy (Feb. 18) and we have scheduled her CAT scan on the 27th of February at 2:45 pm. Then it is CAT scans every 3 months for a couple of years.

Please say a prayer for Alison, I would appreciate it.

Thanks,
Chrissy
p.s. my Mom finished her radiation yesterday!! She is doing great!

February 6, 2003

As we expected Alison's counts are low. Her ANC is at 371, her WBC is at 0.7, so we are now neutropenic. Her monos are somewhat high which indicates her counts are going to come up (at least that is what I have been told). Alison is doing very well, she has no fever. She does have a slight rash on her bottom which hopefully will clear up soon and not cause her to get an infection.

It has been quite an uneventful day. She pretty much has been playing on her computer most of the day. Right now she is playing with her virtual pets. This is the only kind of pet I would want right now.

We are expecting to get up to 6" of snow tonight and tomorrow morning so I pray that she doesn't spike a fever!

Will write again soon.
Chrissy
p.s. Happy Birthday Richard (again!)

February 5, 2003

Hi All,

Alison is doing well. Her ANC was low on Monday, in the 1500's. She is normally in the 3,000's the Monday following the Dox., Cytoxan, Vincristine dose. She does get another blood draw tomorrow morning. That is usually her lowest day. I do expect it to be low, as long as we don't get a fever, we are doing good.

She and I went to the park the other day (before I knew her counts were low). I have posted some pictures. She had such a good time and so did I. We had a picnic lunch, it was a really nice day.

I will update again soon. Thanks for the prayers! God bless.

Chrissy
p.s. Happy Birthday Richard!!

February 2, 2003

I guess I really messed up with the picture placement/captions... I have placed the correct pictures.

Alison is doing very well. I haven't heard anything from the hospital about her blood culture. I will call later today to see if anything has shown up. The cultures usually take about 24-48 hours.

Tomorrow we get a blood draw and I am curious to see what her ANC is this time. She has had some loose bowels the past 12 hours which I think she may just be getting over a virus or something. She has had NO fever at all, so that is promising.

I will write again soon. God bless.

Chrissy

January 31, 2003

Alison is finally able to eat. She did vomit again late this morning. By this afternoon, she was back to her normal self. I was really starting to get worried about her. It (the chemo) has never affected her this badly before.

Last night we had a "little" scare. Alison was getting her Daddy's blood when we saw some blood on her shirt. We thought she had either had a leak in her IV or that her nose started to bleed. Well, her broviac tube had a tear in it, it was very small but enough to cause a problem. We had to stop the transfusion and throw out the rest of the blood. Well the nurse practitioner fixed the problem but it was extremely stressful for Alison. She was really scared on top of vomiting all day long. She had just the most miserable day. The next step is for the hospital to test the blood to make sure there is no bacteria in it. The chances are greater for an infection because of this tear.

This tube has lasted the past 5 1/2 months. We have ONE more dose to go, and we get a tear. Figure the odds.

Anywho, all is well. I have posted some new pictures also. Thanks again for all the prayers!!

Chrissy

January 30, 2003

Hello All,

We are currently at Children's Hospital. Alison is having a little bit of a rough day. She will not take anything by mouth except 2 sips of water. She will barely smile. She says that she feels okay and that nothing hurts. She just wants to lay on the infusion chair.

Her counts are low, but that was expected. Even her hemoglobin is not as low as it normally gets. I am a little concerned that maybe she is coming down with something. I really hope that isn't so. Hopefully when she gets the transfusion tonight she will perk up.

Last night/yesterday she had trouble with eating. She was so hungry but every time that she ate, she would vomit 5-10 minutes later. She was able to keep down a couple of bites of dry toast late last night.

I will write again soon.

Chrissy
p.s. Happy Birthday to Patrice and Happy Belated Anniversary to Suzie and David.

January 27, 2003

Alison made her blood counts so we will go into Children's tomorrow for her last 3 day dose of chemo. Her platelets are 102,000 (needed to be 100,000 for chemo to begin) and her ANC is 10,200 (needed to be at least 10,000 to start chemo). So we just made it! She is doing very well. Her energy level is a little low, but she is doing fine.

After this dose we have one more dose of chemo on the 18th of February. Yay!!

Thank you all for the prayers for Alison. Thank you also for signing the guestbook!!

Will write again soon.
Chrissy

January 21, 2003

Hello All,

Alison is doing fine. She did bump her head Sunday night and had a knot on her head. We called her oncologist because we knew that her platelets were probably low. The oncologist suggested that she go to the emergency room for them to look her over. They did a CBC (a complete blood count) and decided that her platelets were low enough to warrant a CT scan. The CT scan turned out normal. When the platelets are low, your blood does not clot very well. When they are extremely low, it doesn't clot at all.

I guess that we didn't exactly avoid the hospital this time...we did avoid a fever and a hospital stay. Her white blood cells are going back up! Things are looking good. Thanks for all the prayers!!!

Chrissy

January 19, 2003

Alison is doing very well. We are still home and I think that her counts are on the way back up. We get a blood draw tomorrow to confirm. We avoided the hospital this time... YAY!!! Her temperature is back to its normal range. Thank you for all the prayers!

Her next chemo dose is on the 28th. It is a 3 day dose of Doxirubicin, Cytoxan and Etopiside. Then it is just one more dose of Doxirubicin on the 18th of February and we are finished!! Then the next step will be removal of the port and then CT scans every 12 weeks.

We talked today about spring coming and her cancer treatment being over. We also told her that she will still have to have scans. She is getting excited about not having to go to the infusion room anymore. I pray to God that we never have to have chemo, radiation, see the infusion room or stay at Children's hospital ever again. She has been through so much. As have all of the children with cancer.

Thank you again for all the prayers for Alison. God bless.

Chrissy

January 16, 2003

Alison's counts are low as were expected. Her ANC is down to 200. Her white blood cells are 0.4. She is very tired today. We have spent most of the day playing Zelda on Nintendo. Her temperature has been hovering around 98.6 - 98.9 which is high for her. But I think she will be okay.

I have been having problems with my internet and phone line lately. I have been trying to update the site for a few days now!! Oh well...I have posted some new pictures. Will write again soon.

Chrissy

January 15, 2003

Today went very smoothly. Alison has been very energetic today. She seems to have so much energy. She has not been falling down as much as she was. It seems to be whenever she gets Vincristine (one of her chemo druge), she seems to be a lot more clumsy. She is not due to have any more Vincristine until the 28th of January.

We do get a blood draw tomorrow and I do expect it to be low. She did have a jump in WBCs on Monday's blood draw, which is promising and unusual. The oncologist said that it does happen but not that often. Went from (approximately... don't have the figures in front of me) 1700 to 5000. We are expecting snow tomorrow through Friday, so hopefully she won't start running a fever. I prefer not to drive in the snow.

Chrissy
p.s. My Mom is going to finish her radiation the end of this month. She is doing well, a little tired, but doing well.

January 11, 2003

Well the week is finally over. Alison did very well with her chemo this week. She did get sick a few times and had very little appetite, otherwise everything went fine. She is doing well today and back on her GCSF shots. We only have 4 more visits to the infusion room! The end of her treatment is coming. I am excited and nervous... but mostly excited that we can get back to a somewhat normal life.

I think we are going to start looking into schools very soon for next year. Alison just turned four and I think she is ready for school. She is a little shy around other children and her having cancer and not spending any time with other children hasn't helped that at all.

I haven't been the greatest at getting thank you's out to people since this all began and I apologize. This has been the longest 5 months in my life and I have so many things to be thankful for. I am thankful that Alison is happy and that she is doing so well with her treatment. I am so thankful to God for that. I am so very thankful for all the prayers for Alison from everyone. I really am and I hope that you know that comes from my heart.

Chrissy

January 09, 2003

One more day of the infusion room to go. Alison is holding up very well. Her counts are okay. She will get a transfusion tomorrow, her hemoglobin is quite low. She doesn't have much of an appetite while we are at the hospital. Once we leave, she is starving, of course she wants McDonalds.

She is starting to talk to the nurses quite a bit. She also gets so excited when it is time to unhook her from the IV. As soon as they flush her broviac port, she is basically walking toward the door telling Mike and I to "C'mon, let's go". She is starting to come out of her shell somewhat, which I am so glad to see.

I will post again soon. Thank you everyone for their prayers.

Chrissy

January 07, 2003

Today was our second day of chemo this week. She did get sick this morning and didn't have much of an appetite. She usually doesn't get nauseous with this dose, but this time for some reason she did. But in general she is doing fine.

We went in yesterday morning and they did her weight and height. She is now up to her weight that she was prior to surgery. She had been eating so well. Unfortunately the appetite is pretty much gone today, but it will be back.

Her counts are low this time. She started chemo with an ANC of 1700. Hopefully we will pull through this dose with no infection or fever.

My sister Jackie came by the hospital today to give blood for Alison. Alison will need another transfusion on Friday or Monday (at the latest). Her hemoglobin is low again.

Jackie also brought by Alison's Christmas present which was Disney wigs (Aurora, Cinderella and Snow White). Alison loved playing with the wigs (I have posted some pictures) and so did Mike (he will probably get me for this!).

Thank you all for your prayers. God bless.

Chrissy
p.s. Happy Birthday (one day late) to Scooter and Happy Birthday to Kathy. I love you guys!

January 03, 2003

Everything is going well. Alison is feeling good. We go to Childrens starting Monday for our last 5 day dose of Chemotherapy. She will be starting this dose lower than normal. She made her ANC counts early this time. When she starts her next dose she will have been off the GCSF shots for a week.

No one seems to be concerned that her blood counts are recovering quicker than they did in the beginning of chemo. The oncologists told us in the beginning that her blood counts would take longer to recover the longer she was on chemo. Alison has done the complete opposite, her body is recovering quicker with each dose.

Alison has had quite a few falls recently. She hasn't hurt herself, other than a few bruises. All in all she is doing extremely well and we will be finished (hopefully) by the end of February.

Thank you all for the prayers and thoughts for Alison, they do mean so much.

Chrissy

December 31, 2002

Hello All,

Alison is doing very well. We are off our GCSF shots!!! Her counts are WAY UP. Her ANC was in the 17,000's yesterday. All of her other counts are good too. I think her body is adjusting to the chemo, she seems to recover from her doses quicker than before. I hope that is good news.

She starts her next dose of chemo on Monday. We are getting closer to the end of her treatment. We are going to do something special to celebrate when her port comes out, Alison wants to have a party which would be fun.

I hope that everyone has a great New Year. Thank you all for thinking of and praying for Alison. God bless.

Chrissy

December 29, 2002

I don't have much to report. Alison is feeling good and she is very energetic. I feel so blessed that everything is going well. I know that a lot of people are praying for Alison and for that I am thankful.

We spent the day at my parents house. Alison really enjoyed herself. It was good to see my parents and my sister Kathy who is visiting.

Alison doesn't have any chemo until the 7th. We are heading into the home stretch.

December 26, 2002

I hope that everyone had a nice Christmas. We had a great day. Alison would open a gift and play with it for a while, then go back to the tree to open another. This went on pretty much through the afternoon. She really enjoyed all the new toys. It was wonderful seeing her get so excited. I did take some pictures which I will post today.

Alison had her blood drawn this morning. I don't know what the results are as of yet, she has been feeling good, full of energy. She doesn't even look that pale to me. So hopefully they are in the good range. It was extremely high on Monday (in the 10,000s), considering that she just finished her chemo Thursday with a reading in the 2000's. So here it is Thursday a week later and I am not sure what to expect. I almost wonder if it was a mistake. Well I will find out soon enough.

Thank you everyone for your prayers for Alison.

Chrissy

December 23, 2002

Christmas is almost here. Alison is so excited. She was jumping up and down earlier saying Christmas is coming, Christmas is coming. I feel so fortunate this Christmas that she is here and that she is doing well with her treatment. I have so much to be thankful for.

Her blood counts are actually quite high today but will dip soon. Our next dose is on January 7th. When we spoke to the oncologist last week they informed us that her next scan will be at the end of her treatment, which will be in February. In a way I am looking forward to the end of treatment, in another way I am not. I feel protected with the chemo.

Thank you everyone for their prayers. I can't thank you enough. Have a Merry Christmas and a Happy New Year. God bless.

Chrissy
p.s. posted some new pics

December 20, 2002

Well another dose of chemo is over. We have 3 more doses over the next few months and one extra dose of doxirubicin (because we missed the first due to a different diagnosis). We are getting closer to the end of her treatment. Yay!

Alison did have some vomiting on the way home from the hospital Tuesday night (after the doxirubicin). We stayed later than usual at the hospital because she had an echocardiogram (which was normal), which in turn made us late in getting her anti-nausea drug to her.

Then on Thursday the nurses said that we really didn't need blood work since it was a short week of chemo. Well, Mike said that according to Alison's previous counts her hemoglobin could be low... he was right (he's got everything down to a science). We needed yet another transfusion. So we didn't leave the infusion room until after 9:00 pm. Of course after the infusion, Alison was a bundle of energy.

This Christmas Alison's counts are going to be low, so we will be spending Christmas this year sans family. So I will be making our Christmas feast... no turkey after my Thanksgiving fiasco... I will be visiting Heavenly Ham!!!

My Mom started her radiation on Thursday and she is doing very well. She has to have it everyday for 6 weeks, then she is finished. Yippee!

Thanks for all the prayers!

Chrissy
p.s. Happy Birthday Linda!

December 16, 2002

Hi All,

Alison is taking a much needed afternoon nap. Thought I'd take advantage of the time and update. She is doing well. Her energy level is way up. Her blood counts are all good. She starts on her next dose tomorrow. This dose unfortunately makes her really nauseaus. So we may lose the pounds I am sure she has packed on the past week.

We had a good weekend. We got out and did some shopping and even went bowling. I took some pictures of her and will post them once I get them developed. She was so excited. She beat my score by 7... yeah, but she had the bumpers on the lane... She was so proud of herself for beating her Mommy, it was hysterical.

Thanks again everyone for their prayers!! Will write again soon!

Chrissy

December 12, 2002

Hi all,

Got a message from the nurse practitioner this evening... she said that the spot on her left (remaining) kidney was "much improved" from her CT scan from October. Not sure what that exactly means... but she assured me that they don't think it to be a re-occurence or to be a tumor. I will put a call in to the oncologist tomorrow and hopefully she can explain it a little more thoroughly. The NP did say however that they will continue to monitor that area closely with each scan. I am sure that that kidney was completely clear when scanned prior to surgery... will have to do some research.

Anywho... Alison's counts are up again (at least WBCs), so no more shots (for a week!). She is so happy. We did a little Christmas shopping today. I am a little less paranoid about germs when her counts are good. It is amazing how anal I have become. Wipe down table, put on hand sanitizer, wipe off paper cups, yada, yada, yada. You would think that I was Felix Unger. Pretty scary.

Well I will write again once I speak to the oncologist. Thanks again for all the prayers and notes.

Chrissy

December 10, 2002

Thank you everyone for their prayers and for signing her guestbook (I will read them to her later... it is very early in the a.m.).

Alison did very well on her scans. We had no problem getting her to drink the contrast. She layed perfectly still for the test. She didn't need any meds to put her to sleep. Everything went super. I am SO very proud of her.

Her lungs are clear, which is usually where Wilms will mestastize (sp?) to. In her last scan they saw something on her remaining kidney. It was what they thought was machine error. It showed again, so they ruled out machine error. They don't think that it is anything to be concerned about (what radiologist said). They (radiologists) don't think that it is cancer, but will continue to monitor that area for any change. They are going to look at the scans more thoroughly and compare it to the last scan. Hopefully I will know something soon.

Her WBC/ANC is back up again. Her platelets are extremely low. Talked to the oncologist yesterday and she said that she may need a platelet transfusion by weeks end. We will get another blood draw Thursday, so until then we are to look out for symptoms (i.e. nose bleeds, gums bleeding, extreme bruising, etc.).

Thank you everyone, again, for all their prayers. Will update again soon.

Chrissy

December 08, 2002

Alison is doing very well. She has an amazing amount of energy. I feel very fortunate that she is doing this well. I also feel so sad for others who aren't doing so well. There are so many children diagnosed with cancer every day. There are so many children that die of cancer. It is so unfair.

I know that when Alison broke her arm this past June, I thought, my God this child has been through so much, she's not even 4. Why? Why does she have to have this pain. Then a few months later the urologist tells me that she has cancer. Sorry... I know it is probably because of her scans tomorrow. I am just so frightened. I am an emotional wreck.

Anyways, I have posted some new pictures of Alison. She seems to be growing up these past few months, not just physically either but emotionally too.

Will write again after I know results of the scan tomorrow. Please say a prayer for Alison, I do appreciate.

Chrissy

p.s. Thank you to Linda for getting Alison's name mentioned at mass.

December 06, 2002

Alison is hanging in there. She has no fever. This is good. I bet this is making Blue Cross Blue Shield happy too... no hospital stay(BCBS...those rotten *#@*&%^s).

We had a good day today. She doesn't have much energy but enough to keep me on my toes. She also ate a tremendous amount of food today. At one point she wanted toast... so she ate six pieces... I wonder if she is having a growth spurt.

She is looking very pale and all of her counts are down. We are probably going to need a platelet transfusion this round. Our oncologist actually predicted that we would need one around this time.

I want to thank everyone who signed the guestbook. I don't talk or see many people these days so it is nice to know others are thinking of you. Much appreciated.

Chrissy

Tonight they are lighting the tree for Candlelighters Childhood Cancer Foundation at the Russell Senate Bldg. Rotunda. I wanted to be there but Alison's counts were too low. My sister went tonight... I hope she takes many pictures of the tree. Thanks Jackie.

December 05, 2002

Alison had her blood drawn today and she is definitely neutropenic. Her ANC is down to 92, WBC's are 0.3. She has no fever, so it is still possible that we can squeak by without going to the hospital. Her temperature normally is around 97 degrees and she is slightly higher than normal for her... not for admission to the hospital. She has nothing to fight off infection now. I pray that we don't have to go.

Alison has her CAT scan this coming Monday afternoon (the 9th). I am feeling very anxious about that, I guess that I will always feel a little anxious before every CAT scan. If you would please say a prayer for Alison, I would appreciate it.

We did go outside this afternoon and play in the snow (thinking that her counts were good... her ANC supposedly was over 10,000 on Monday). Alison had so much fun. I did get some pictures of her... will post them soon. I did just post some pictures of Alison in the infusion room at the hospital.

December 02, 2002

Hi All,

Alison had her blood draw today. Her counts are actually pretty high. Unusually high. Think there may have been a mistake. Will talk to the oncologist tomorrow. They may tell me to stop the GCSF shots... or get another blood draw.

Alison is doing very well. She has had a couple of dizzy moments that I attribute to getting up too fast. Then today she has fallen twice while walking/running. I will bring it up to the oncologist on the next visit unless it persists. She has had a great appetite the past few days, which makes me happy. She mostly asks for her mac-n-cheese... Yuck. I am actually getting used to the smell.

Had kind of a crazy weekend. We decorated the house for Christmas and we had our Thanksgiving dinner. I tried to cook the turkey and it took 8 hours to cook (4 hours longer than I had anticipated). I would like to insert something funny here like I forgot to turn on the oven, but the truth is I just have really crappy luck and am a terrible cook.

Then I notice that Animal Control came by my house during the week and left a notice that one of my neighbors had complained about my "pet". I don't have a pet. I really let this get to me and I don't know why. I guess I just needed to be angry. Thanks Linda for listening to me gripe.

Again, I want to thank everyone for the prayers, they do mean so much to me.

Chrissy

November 29, 2002

Hello All,

I just want to say that I am thankful for so many things. I don't think I would have said this a few months ago. I am so very thankful that Alison is here, alive and happy. Not many parents of children with cancer can say that and for them, I am extremely sad. My heart breaks each and every time that I read about another child that has died from cancer. I don't know exactly what these parents go through, but I am sure it is pure hell. My heart goes out to those Moms and Dads (and siblings too) who have lost someone special in their lives. Please say a pray for all the parents and siblings that have lost a child to cancer.

It has been a long week. We have been in the infusion room all week long. This dose is the one that really knocks Alison out. Her counts are on the way down. Alison is doing well though. She had a transfusion on Thanksgiving, she got her Daddy's blood. That seems to pick her right up. When we got home Thursday night she was running around the house like crazy. I couldn't believe how much energy she had.

Since we were in infusion all week, we are going to celebrate Thanksgiving tomorrow... I am actually going to cook a turkey. This should be interesting. ;) I am really looking forward to it. Alison and Mike are going to decorate the tree, we are going to put it up earlier than usual. Of course it is artificial. One of the doctors told me that we shouldn't have a live tree because introducing new live plants into a home could possibly cause Alison to get a fungal infection, that is the reason they don't allow flowers/plants on the oncology ward.

Thank you everyone for your thoughts and prayers... I hope to one day thank everyone personally.

Chrissy

November 26, 2002

Today actually went by fairly quick at the infusion room. She did feel nauseated today, but we were able to get some food into her belly. The nurse suggested we get another blood count tomorrow instead of Thursday because of it being Thanksgiving. She also said that she wanted to know what Alisons hemoglobin count was because she looked awfully pale. If the counts are too low we may get the transfusion sooner (if Mike's blood is ready), otherwise we are still on for Friday.

We have our next CT scan set up for the 9th of December, so I will definitely need some more prayers (PLEASE) that these scans are clean also. I started getting a little anxious this afternoon after setting up the appointment. I will probably go through a little anxiety before each scan.

I asked one of the doctors about her platelets dropping, she said that it was possible that it was a sign that she might have a virus brewing. I hope not.

Will write again soon. Have a Happy Thanksgiving!!!

Chrissy

November 25, 2002

We spent all day at Children's Hospital. Alison's counts were good to go. The ANC dropped from 28,800 to 11,000, no surprise. Her platelets dropped from 218,000 to 168,000... that was unusual. We have been charting her counts, etc. since this all began and usually her platelets only drop when on chemo. No one seemed to have an answer... it just happens sometimes. I guess I am just scared for anything to go wrong.

Alison was pretty bored today. Mike gave blood today (she is going to get another transfusion on Friday), so it was just Mommy and Ali... I just don't play the same way that Daddy does. She also asked a lot of questions today that made me a little uneasy. One of them... "Mom, do I still have cancer?". I told her that the doctors removed her cancer and that she was getting drugs into her brovie (pet name for broviac) to make sure it doesn't come back. I also told her that it could come back, she just kind of stared into space. I asked her what was on her mind... she just blew it off. It breaks my heart to not know what she is feeling exactly. It's like I want to read her mind and calm her fears and worries.

I am on the warpath with Blue Cross/Blue Sheild. We may have (more than likely) to switch insurance or pay out of pocket because Blue Cross will NOT negotiate with Children's Hospital. We are in the middle of chemotherapy and I am more than halfway through the pregnancy... I am so frustrated with BC/BS. We are going to do whatever it takes to keep Alison in treatment at Children's, so we will more than likely change insurance companies. I really want Blue Cross to pay for this. I found out today about 250 oncology/hematology patients at Children's will be affected by this. Sickens me to no end.

Chrissy

November 24, 2002

It has been a great weekend. Alison's counts were so high, we felt we had to do some fun things this weekend. She is getting stir crazy being home all the time.

On Friday, Alison's birthday, we went to the Aquarium in Baltimore, then out to dinner (Paolos) in the inner harbor. She was so exhausted that she ended up sleeping during dinner. It was such a fun day.

On Saturday, we had a birthday party at home for Alison. Just a few people over. She loved her cake with her picture on it. She wanted to cut the cake, which we let her. She didn't do too bad, she's no surgeon, but not bad. She got lots of presents and really enjoyed herself.

Then today, Sunday, we took her to Great Falls, then to see a play at Glen Echo, then we went out to dinner at the Rainforest Cafe. It was good to see her so happy.

Well tomorrow she will start her 5 day dose of chemo. This dose (Cytoxan & Etopiside) usually hits her hard. She has been responding so well with her treatment as far as side effects go. Her last dose (Cytoxan and Doxirubicin and Vincristine) didn't seem to hurt her counts too badly. I do worry that if her counts don't go down that means the meds aren't working... I hope I am totally wrong about that.

Thanks for all the entries in the guestbook, I really enjoy reading them. Thanks also for the prayers for Alison (and my Mom). Will write again soon.

Chrissy

November 21, 2002

This has been a great day! Thanks everyone for their prayers.

My mom went in for surgery this morning. The surgeon looked around and couldn't find any cancer. They think the spot they saw on her PET scan was just scar tissue from the tumor they had already removed.

I got a call from a nurse at Childrens Hosp. and she said that Alison's ANC count is 28,800... it only needs to be 10,000 to start chemo. This is the highest we have ever been. So we are ready for next week. No more shots for a while. Alison is so happy.

Tomorrow is her birthday and Mike and I are going to take her someplace special. Then Saturday we will have a little birthday party.

Will write again soon!

Chrissy

November 19, 2002

Alison's blood counts are on the rise and it looks like we will be on schedule for chemo next week. She did have a slight cough last night. Hopefully it is nothing. I hope to go visit my Mother tomorrow. Alison is getting bored looking at me every day.

My Mom has surgery on Thursday. Which I hope will just be exploratory to make sure the spots they saw on the PET scan are just scar tissue and not more cancer. So if you could please say a prayer for my Mom, I would appreciate it.

I did post some new pictures of Alison on the website. We were having fun playing dress up (with no where to go). She was actually modeling for her birthday cake. She wanted a picture of herself on her cake this year and thanks to her Aunt Susie it will happen.

I want to thank all of you for your prayers for Alison (and my Mom too). I feel it has made a great impact on her treatment. God bless.

Chrissy

November 16, 2002

Hi All,

Alison doing well today. Looking very pale, so her counts may be a little off. She has also been very tired today. The good news is she has no fever.

I had a little trouble sleeping last night. Alison said last night as we were saying our prayers, "I just can't get rid of this cancer". It broke my heart. I think in her mind the fact that we go to the hospital so much for treatment makes her think that she "still" has cancer. I explained to her about how chemo helps make sure that cancer doesn't come back. That her cancer is all gone.

I watched her sleep last night for a long time. She looked so beautiful, heck, she is beautiful. I have times when I think that I better hold on to this moment and that scares me. We have been taking many movies and picture of Alison (like we used to when she was younger).

We were looking at pictures this afternoon. She wants to get a picture of herself on her birthday cake. We came across pictures of her in her cast back in June/July. I remember telling her... that is probably the hardest thing you will ever have to go through... what a lie. It has been such a crappy year. But I think that things are looking up.

I have to think positive. I will write again soon.

Chrissy

November 14, 2002

Just a short note... Alison is doing very well. We had a blood draw today and her counts are good. If she were to spike a fever this weekend we may be in for a hospital stay, but at this point it seems very unlikely. We took a walk this afternoon and she got tired a couple of times and wanted the stroller, but, for the most part, her energy level is good.

Mike stayed home today, so as you can guess, Alison had a "fun" day. She does have so much fun with her Daddy.

I will write again soon.

Chrissy

November 12, 2002

Hi All,

I wanted to post about my Mom. She did talk to her doctor today and they think that she has some cancer in her breast (near the spot where the cancer originally was). They are going to go in on the 21st and if it is cancer, they will remove the breast. She is doing well... could you please say a prayer for my Mom... Thanks!

Now to my other loved one... Alison had a dose of Vincristine today and we don't have to get chemo until the 25th! We actually get a week off. She still has to get the daily shots to boost her WBCs, but that is a given.

She has been really restless today. She has been that way since we left the hospital. She did get a larger dose of Vincristine, not sure if that has anything to do with it or not.

Her blood counts are actually pretty good... they do expect her counts to go down though. Her immature WBCs are almost nil. .. we will find out on Thursday. But we think we can dodge a stay in the hospital this time.

All in all things are going well. Thanks for all the prayers, I really do appreciate them!

Chrissy

November 10, 2002

Not much to report... Alison is doing well. We had a great weekend. The weather was beautiful here so we spent a good amount of time outdoors. We had a couple of picnics and did some hiking. Alison had so much energy this weekend and her appetite is out of this world. I think she may be having a growth spurt. I took a whole bunch of pictures (which I turned in this evening) and when I get them back I will post them on the site.

We have a blood draw tomorrow and we do expect that her counts are low. I pray that we don't get another infection. I have become so paranoid about germs. Talking to my Mom, I guess that this happens to people that have cancer or are caring for someone with cancer. From my understanding, the chemo drugs kill all or most of the white blood cells [wbc's](mature and immature) in the body. So the ability to fight an infection (any infection) is very difficult without the aid of antibiotics. Some infections could be fatal to a child with low wbc's. That is a scary thought.

We can pretty much time when Alison's counts are dangerously low, so you can bet that I am following her around with a thermometer in hand.

Will post again soon.

Chrissy

November 08, 2002

We didn't get home from the hospital until late last night. She did have a transfusion last night. Her red blood cells were very low yesterday (I may have already posted that... if I am repeating myself it is just because I am tired).

Alison slept so well last night. She did have some dry heaves this morning (actually this afternoon if you consider that she woke up around 10:15.) but that soon went away. Her appetite is much better tonight. She actually ate 3 hot dogs for dinner. That is a lot for a child who only weighs 39 pounds.

Alison is back to her daily shots! She truly hates these days. When Daddy got home from work, the first thing she said was that "It was a bad day, I had a shot". It saddens me that she relates the whole day to being "bad" just because of a 10 second episode. I guess in a childs mind that episode lasts so much longer than 10 seconds. I wish there was some way to give her something through her broviac port instead of her skin.

All in all things are going well.

Chrissy

p.s. Most of you that know me, know my Mom also... FYI: My mom got some not so good news today. The doctors saw something on her PET scan and they want to look into it a little further. I hope that it is nothing, it could be just some scar tissue. I hope and pray that it is nothing.

November 07, 2002

We are in the infusion room today. This is our last day on this dose of chemo. Alison is doing okay. This dose seems to make her very nauseated. She vomited yesterday morning and this morning. Once she gets the Zofran in her system it seems to help. It breaks my heart to see her in pain. I really hate this cancer, basically all cancer.

My mother is getting a PET scan today to make sure there is nothing else going on with her. She was diagnosed with breast cancer earlier this year. She has done very well with her chemo. I hope and pray that everything goes well. If you could say a prayer for my mom I would appreciate that also.

Alison didn't eat or drink anything yesterday until we got close to home. Then she said that she wanted some chicken nuggets and a cheeseburger. Yay... she does have an appetite. She ate very well last night. She also slept very well (once she got to sleep!!). Maybe the hospital adds to her nausea... that is so understandable.

There are so many children in the ER and some in the infusion room sneezing and coughing. I am so afraid that Alison will get another cold. She handled the last cold very well, even with her counts going down. She really is a strong little girl.

I will write again soon.

Chrissy

November 04, 2002

Hi All,

Alison doing well. We went to visit Grandma today, our counts are really well. Ali had a good time painting with Grandma and Linda and singing with Grandpa while he played the guitar. Today was a good day. We have been getting out a little more lately and I think that it is good for Alison... and good for Mommy too.

We go in to Children's tomorrow for another dose of chemo. This dose is the one that makes Ali quite nauseous. She usually doesn't eat during this particular chemo treatment. She has been eating so well lately, so hopefully she has put on a few pounds. She sure feels heavier.

I did post some new pictures, still haven't turned in my halloween pictures... shame on me. Will update soon.

Chrissy

November 02, 2002

Hi Everyone,

Alison is doing well, her ultrasound came back fine. There was nothing unusual (thanks for all the prayers!!!). We celebrated at Rain Forest Cafe last night and hopefully we will be going to the zoo tomorrow. We were all very much relieved. On crazy thing, Alison has gallstones, go figure. She is not even 4 yet!!! As long as they are not causing any symptoms/pain, there is not a problem.

We took the CT scans and ultrasound pictures to the doctor at NIH (really like him). They had told us in the beginning that they wanted to be kept informed as to Alison's progress (for research). The doctor told me that the first scans after chemo treatment starts and the first scans after chemo treatment ends are the most importants ones for them to see.

Alison is still on her antibiotics and will be finished with those on Monday. Hopefully we will begin another dose of chemotherapy on Tuesday. Her platelets are low (about 23,000), but hopefully they will bounce back soon.

Alison had a great time trick or treating on halloween. We hit a bunch of houses. She was dressed up as a rockette. The uniforms that the rockettes wear in the Thanksgiving day parade (looks like a christmas elf costume). She looked beautiful. She said that "Halloween is her favorite holiday cause you get candy". Wait til Christmas...

Again, thanks for all the prayers & support.

Chrissy

October 30, 2002

Alison is doing well. She had a flu shot today. She was pretty bummed that she had to have two shots today, well actually more than bummed. This one didn't seem to hurt as bad as the GCSF shots. Mike and I had ours a couple of weeks ago when her counts were going down.

We are going to go trick or treating tomorrow so she is pretty excited about that. Her counts are going up, so it should be okay. We have been kooped up either in the house or the hospital, it will be good for her to get out. I guess that my biggest fear is that she will come in contact with someone who has been in contact with someone with chicken pox. But when your trick or treating, your outdoors. Sometimes I wonder if I am being paranoid. The oncologists suggest sending a child (who is going through chemo) to school when their counts are good. I just don't want anything to interfere with her treatment.

The "at-home" antibiotics have been going well. It wasn't hard at all. Piece of cake.

Her sonogram is this Friday. Please say a prayer that everything looks good... no suspicious spots. I really do appreciate it.

Chrissy

p.s. Happy 4th Birthday Shannon (my God-daughter)!!

October 28, 2002

Hello Everyone,

We are home!!! Yay!! Alison is doing well. Her latest urine test was negative for blood. It seems that when we do a test strip it sometimes comes back with traces of blood. But every urine test that we send in a cup or pad is negative. Hopefully it is nothing, the doctors aren't too concerned, which I hope they are right. We will have some sense of calmness (I hope) when we get the ultrasound this Friday. I just keep worrying that something is wrong with the other kidney, God forbid.

We are having the home health care agency come by tomorrow to show me how to administer the IV antibiotics. This ought to be interesting. Fortunately the antibiotics only have to be run for about 15-30 minutes (not 2 hours like one of the other antibiotics we had this weekend) and just once a day.

All in all, Alison is doing very well. I did get some great pictures at the hospital, unfortunately they are on kodak paper, so once I get those developed I will put them online.

We are all very sleep deprived so I will sign off and try to lure my "2" children (Mike and Alison) to go to bed.

Thanks for all the prayers and thoughts!!!!!

Chrissy

October 28, 2002

Alison is doing well. Last night was fairly uneventful, so we got some much needed sleep. We might go home today if her counts are up (they were 235 yesterday, only need to be 250) and if there is no more trace of blood in her urine. They did a urine sample early this morning, have not gotten the results back yet. Her urine has shown signs of blood on and off for the past few days, so I am concerned (to say the least) that something is wrong. I don't know if you can have an intermittent problem with your urinary tract or God forbid your kidney. I don't want to go home and there is a problem and find out a week later that if we caught it in time it wouldn't be so bad. Time is so important these days, much more than before.

They did find out what bacteria was causing her fever, it was a strep strain. They took her off the vancomycin, which is one of those drugs that they give you when the good it does outweighs the bad. Kinda scary huh? Some of these drugs have so many bad side effects, long term effect, etc. I am one of those people that shouldn't read about those. They are right when they say that ignorance is bliss!

She is on 3 different antibiotics right now. All of the antibiotics have to be administered by IV so hopefully they will give me just one. Some are every 8 hours, others are every 6. The home care company is supposed to come by with the IV equipment and show me how to use it.

I will write again as soon as I know something.

Thanks again for the prayers!!!

Chrissy

p.s. My Mom is finished with her chemotherapy! She is doing well and starts her radiation soon. Yay Mom! I love you!

October 27, 2002

We are still in Children's Hospital. Last night was a long night. The nurse came in to do her nightly blood pressure and temperature check. Alison's blood pressure was very low so she checked again using the other arm. She then went to get a new machine to make sure it wasn't a mechanical problem. Once it was decided that it was Alison, she sent for the doctor. The doctor accessed her and they decided to up Ali's saline, give her a "bollus" (not sure of spelling), which I gather is basically just a boost of fluids into her system. That didn't seem to make any difference to her blood pressure, which at times fell even more. So the docs came in again, and we tried one more time with the bollus. The said that if that didn't work then they would have to admit her to ICU and give her meds to bring up her blood pressure. At that point the ICU doctors were notified and they were going to come up to access her, and Ali's blood pressure returned to normal.

They also drew another blood culture. They also did a urine culture (her urine is smelling funny [which could be a result of antibiotics], and was showing traces of blood), but that came back normal, thank God. So basically we have to wait at least 48 hours after the blood was drawn to see if anything develops. So hopefully we will get out of here on Tuesday. Either way she will continue on an antibiotic once we get home.

One good bit of news, her ANC is coming up. Also Ali is happy and doing well and has no fever. We are going to dress her in her halloween costume today, they are having a craft/halloween party down in the atrium today (we unfortunately can't go because of counts) and I hopefully will be able to go downstairs and collect some crafts to bring up for Ali to do.

I will update again. Thanks again for prayers and support!!

Chrissy

October 25, 2002

Hi All,

Yesterday was quite a day. Alison had a low grade temperature that turned into a high grade. I called Childrens to get her ANC counts that had been drawn that morning and to see what my next step was. They told me that her counts were good (in the 1700's, which gives her the ability to fight infection) and that I should take her to the closest hospital (Civista) and get an intravenious antibiotic and come to the hospital clinic the next day. Well after about 4 hours at Civista we find out that her counts are extremely low (Southern MD Hosp who had the counts did not fax over her labs and the nurse at Childrens accidently read last weeks counts). The nurse comes to our room at the ER at Civista and says that her counts were low and that the door needed to be shut. We were shocked to say the least, her ANC was only 26. SO after roughly 1/2 hour we finally get some antibiotics into her and wait for the ambulance to transport her to Childrens. They wouldn't let us take her to Childrens ourselves.

So when we finally get to childrens they draw blood again and her ANC was only 12. They also ran some blood tests to check for infection. She does have a bacterial infection of some sort. We won't know what exactly it is until Sunday hopefully. She is on a strong antibiotic called Vancomycin. She actually had some kind of reaction to it where her scalp turned red. After a dose of benedryl that went away.

She did get a transfusion last night. Her hemoglobin was very low. She is also low on platelets, which she may need to get a platelet transfusion as well, we will see. She is doing very well considering. Her attitude and spirit are good. Her fever is gone and she is playing with her Daddy (so you know that she is happy). That is pretty much it. I will post again soon to let you know her progress.

Thanks again everyone for your prayers and support, as always, I do appreciate them.

Chrissy

October 21, 2002

Hi All,

Alison is doing well. Alison has had some stomach pain last night and today. She would wake up and cry for a minute and then go back to sleep. It is 11:00 p.m. right now and she is still up, has been up since 9:00 this morning. Where the energy comes from, I do not know.

Her ANC counts are good right now, we do expect them to go down. Her ANC counts did not hit rock bottom with her last dose (Cytoxan, Doxirubicin and Vincristine). I do think, and I stand by this, that if the chemo is working, your counts should show it.

She has been such an angel lately. We decorated cupcakes yesterday (posted some pictures), and she had a blast. She wanted to eat one and didn't like it and spit it out... I blame that on the effects of chemo on the taste buds, not Mom's baking (although if you know me... I am definitely a box baker, nothing by scratch, unless Betty Crocker doesn't make it).

Well not much to report, we have our Vincristine dose tomorrow, but that is a quick one. I will post again soon.

Thanks again for the prayers and all the support, it is nice to read the guestbook and see everyones notes. I appreciate it!!!

Chrissy

October 19, 2002

Alison is doing well. We did get outside today, it was windy and cool out. Alison wanted to swing. She seemed to have a good time, but she didn't want to stay outside for long. I think that she is getting too used to being indoors.

We are back on the daily shots to boost her immunity, which she hates. She actually said that she would like to start her world over, where she wouldn't get any shots. Sometimes I wish I could change her world.

I went to Borders last week trying to find some book about Wilms or childhood cancer in general. I found NOTHING. I found many many books about breast cancer, which, believe me I am glad that breast cancer gets a lot of attention, my Mom is going through that now (and she is doing very well with her treatment, Thank God. She has one more dose of chemo, then 5 weeks of radiation). It just ticked me off that there was nothing that I could take home to read without having to wait 4-6 weeks... Sorry I am griping so much.

Anyhoo, this week we only have one chemo dose (vincristine), which is just a injection into her port. Takes about 1 minute. I know that Alison will be happy about that, yesterday she said that she was getting bored of the hospital. I don't blame her. She deserves so much better than this.

Chrissy

October 17, 2002

It has been a long day/week. We have one more day left on this dose of chemo. Alison is doing well. She did get sick again this morning. After that she was fine. She had an appetite, for which I am thankful for. She was her normal bouncy energetic self.

Alison did have some blood in her urine today. The nurse took a urine sample and sent it to the lab (it came back negative). We have been taking this drug that can have an effect on your bladder. It can cause hemmorhagic cystitis (not sure if spelled correctly), basically bleeding in the bladder. So she has to be quite hydrated before and after this drug. They also give her another drug to combat the effect on the bladder. This is something that they keep a close eye on whenever she has this drug. When the nurse first said that she saw traces of blood in her urine, I was worried, thinking about that "spot on her kidney".

Alison is scheduled for a ultrasound on the 1st of November to look at that "spot" on the CT scan. The report said that this area is about 5mm in size. The doctors seem to think that this is nothing (as I stated earlier) to worry about.

Thanks for all your prayers and support.

Chrissy

October 15, 2002

Hi Everyone,

I am writing today from Children's Ronald McDonald room. The computer is up and running, finally. The keyboard is kind of sticking... so if there is a mistake, it is the keyboard... not me. Mike and Alison are in the infusion room playing MarioKart (a nintendo game). She is pretty good at it.

Alison is doing well. Her blood count was good yesterday, so we were able to start her chemo. She did get sick in the car this morning, but is doing okay now. They say that sometimes a child will get sick from a drug, even if they didn't get sick the first time they had it.

This is one of our long weeks at Children's. We are here basically from 8:30 a.m. until about 6:00 p.m. Last night we didn't get out of here until after 7:00 p.m. It is a long day, but Alison handles it very well. She actually enjoys coming here (her words), because she gets to play with Daddy all day long and he doesn't have to go to work. What am I... chopped liver?

Anyhoo... We are doing well. I appreciate everyone praying for Alison, you will never know how much that means to us. I also want to say thanks for all the words of support. I will keep posting and hopefully get some new pictures soon.

Chrissy

October 13, 2002

Alison is doing well. Her blood counts are good. Her platelets are coming back up (73,000... need to be at least 100,000). Her ANC counts are good (so we get to stop the daily shots in the leg... YIPPEE). So hopefully we will be starting chemo on Monday.

We went to Glen Echo theater yesterday to see a play. Alison enjoyed it for about 30 minutes then said "this is taking too long." She said the play wasn't colorful enough. She might be a critic someday. Then off to Zany Brainy and ice cream. It was a nice day. She slept like a rock last night.

When we got home there was a message from a nurse at Childrens. She said that her scans look good, then added that there was a tiny spot on her kidney that they would be monitoring. From my conversation with her oncologist I thought it was in the kidney/abdomen area (I assumed that it was the area in which the right kidney was removed), not the left kidney. I hope and pray that this spot is nothing. I will talk to her oncologist about an earlier ultrasound. Four weeks is too long.

I did place some new pictures. Alison got a "rockette" dress from her Aunt Susie which she loves. She calls it her Princess dress. She loves to play princess.

Again, thank you for all of your prayers!

Chrissy

October 11, 2002

Thank you everyone for your prayers!!

The oncologist just called and said that there is no evidence of reoccurence. She did say that there was a "spot" in her kidney/abdomen area that is probably an area that just did not fill with contrast... she said that this happens sometimes (actually quite often). I am still concerned about that... but she told me to take it as there is no reoccurence. We will do an ultrasound in 4 weeks to check it out. Of course, we are also scheduled for another CT scan in 6 weeks.

I still have not heard about her bloodwork, so hopefully we will be going in for chemo on Monday. I really don't want to put off her treatment at all.

Thank you all again for your prayers, I really appreciate it.

Chrissy

October 10, 2002

We had the CT scan, which went fine. I do not know any results, as I had hoped. I hopefully will know something soon. Alison did not get put under for the test. She is such a brave girl. She did have a little trouble drinking the contrast, which is understandable. Alison's Aunt Susie came by the hospital which helped a lot. I will post when I know the results.

Chrissy

October 09, 2002

We had a long day yesterday. Tuesday night we didn't get much sleep, Alison was up coughing a lot. Still no fever, we don't expect to be admitted this round.

We went to the hospital for a "short visit" and ended up staying for a while. The visit went well, her blood count is down, which we expected (actually kind of hoped, to me, it shows that the chemo drugs are working). Her platelets are also going down and that may get in the way of her getting her chemo on Monday. Hopefully they will go back up. I don't think they give transfusions unless it falls below 10,000. She started with 125,000 and it is now in the 20,000's.

After our clinic appointment, the hospital put on a circus in the lobby of the hospital. We stayed there and watched the clowns (which are mostly doctors) perform tricks. They are absolutely wonderful. You should have seen all those kids faces, smiling. It was priceless.

Afterwards we went by the CT scan department to check on what exactly we need to do for Thursday. The doctors scheduled her appointment for a regular CT scan, with Alison being awake. But... if she doesn't lay perfectly still during the procedure then it is useless and we would have to re-schedule for another appointment. So we agreed to have her fast that morning, just in case. I hate to have her fast, since her weight is down, but I really don't want to wait on a CT scan.

I won't know any final results on Thursday about her scan (I might know preliminary results). The oncologist told me that I would probably know something on Friday afternoon. Once I know something I will post.

Thanks again for all the prayers!!

Chrissy

October 7, 2002

I know that I just updated... well I am updating again.

I want everyone to know that we did get out of the house yesterday. I am not keeping Alison in a bubble. Alison woke up and said "I am bored staying home all the time, there is nothing to do". Mind you, this child has more toys than FAO Schwartz. We went outside and played on the swingset (which I haven't let her outside for fear of West Nile Virus [maybe I am a little paranoid, in my mind better safe than sorry]). We went by Captain Billys Crab House on the water and went for a walk on the pier. On our way home, she said that she had the best day. Bless her heart.

I did post some new pictures.

Chrissy

October 07, 2002

Hi Everyone,

Things are going well. Not much to report.

Alison had her blood drawn today but we haven't gotten our results back. We won't be getting them until tomorrow. I am really worried about her platelets. They have been on a steady downslide since we began the chemo. I talked to a nurse today, and asked a bunch of questions about platelets, because Alison does seem to have many many bruises on her body. She said that if Alison's gums or nose starts to bleed then she probably needs a platelet transfusion. I do know that platelets have something to do with helping the blood clot. That in itself is a scary thought. How do you stop a nosebleed that won't clot. Maybe I should have asked that.

Anyhoo, we are still home. She still has a cold, at least a cough and a runny nose, but NO FEVER. She is (as far as I am concerned) running a "fever" for her regular temperature... which is usually 96.8. She now has a temperature around 98.5.

We do go tomorrow for Vincristine and on Thursday for her CAT scan (please pray that everything is clean).

I want to again thank everyone for signing her guestbook and for their prayers. I can't tell you how much it means to me.

Chrissy

October 04, 2002

Hello Everyone,

I want to say THANKS for all the support that everyone has given us during this time. I don't know what I would do without my family and friends... probably go nuts. Thanks for signing her guestbook... it really does mean a lot.

Alison is doing well, despite having a cold. She is eating much better (still insists on Mac'n cheese). She is sleeping okay, having a little trouble with congestion, that seems to wake her up quite often.

Her ANC counts went up a little on the 3rd. The doctors office said that every child has a pattern to their blood counts after chemotherapy. She may go up a little, then hit rock bottom, they aren't really sure. They said that since she has the yellow/green stuff coming out her nose (sorry for being so graphic), she more than likely has a bacterial infection brewing and we will probably be admitted this weekend or early next week.

Next week we go for a CT scan to check her chest and abdomen (basically her torso), to make sure that everything looks good. So PLEASE pray for her scans to be clean this coming week. Her CT scan is on Thursday.

Chrissy

October 01, 2002

Hi Everyone,

Alison is doing well. She got her transfusion today. She definitely has more energy. It looks as though she is coming down with a cold, unfortunately. As long as she doesn't start running a fever.

She is getting some of her appetite back. Of course this means that she wants macaroni and cheese for lunch and dinner.

We go back to the hospital tomorrow for some more chemo. This one (Vincristine)is only an injection into her port (not a IV drip). We won't know her blood counts until Thursday afternoon. She more than likely will be neutropenic (ANC counts below 500). If she does start running a fever we will have to be admitted to the hospital again. This seems to be a cycle that most kids go through while on chemo, whether or not they have an infection.

I wanted to thank everyone for their prayers and for signing her guestbook. It means a lot to me. I will try my best to keep you all informed as to how Alison is doing. If we do get admitted I may not be able to update (the Ronald McDonald room's computer is not working properly as of this past weekend). May have to talk to that clown. ;)

Chrissy

September 29, 2002

Hi Everyone,

It is kind of late, so I will be brief.

All is going well. It has been a long weekend. We have spent many hours at CNMC this weekend. Alison had her first dose of Doxirubicin. She does seem to have some nausea with this drug. She had dry heaves this morning, probably would have vomited had she had anything in her stomach. She ate 2 goldfish crackers and some popcorn yesterday, that is all. Her appetite is almost nil. They say that if the chemo drug is causing her to lose her appetite, it should only last 24-48 hours.

Her blood counts are down again. The ANC counts really dropped. They were in the 15,000's on Thursday and today they were in the 2 thousands. Her hemoglobin is down, which means that we are going in tomorrow for a transfusion. She is very pale, but still has some energy (and her sense of humor). Mike gave blood on Friday, so hopefully it will be ready tomorrow (it takes a couple of days of testing until it is ready for transplantation).

That is all for now, will keep updating.

Chrissy

September 27, 2002

Our ANC counts were good yesterday. YAY!!! Alison actually jumped up and down at the fact that we didn't have to get a shot! We were going to go out to dinner last night, to celebrate, but Alison changed her mind once Daddy came home from work. She just wanted to play. It is amazing the things that we get excited about now.

We are currently at Childrens Hospital getting our chemo (Vincristine, Cytoxan and Doxirubicin). The Doxirubicin (her first dose) that she got today was the color of orange jello, and now so is her urine (which is normal). Sorry Alison, nothing is personal anymore. She has taken it all so well, so far. She did have some stomach pain which only lasted for a couple of minutes. Because of her delay this week to get chemo (because of low counts), her visit next week will only be delayed one day. The following week we are back on schedule.

The oncologist told us today that we can expect her counts to drop fairly quickly after this dose. We are going to have her CT scans in a couple of weeks. I am very nervous about that. So please, say a prayer for Alison to have a clean scan. Thanking you in advance.

I also want to thank everyone for signing her guestbook. I appreciate it.

Chrissy
p.s. Happy Birthday Grand-Daddy, er, uh, Mr. Deeds

September 25, 2002

Nothing to report today. Had a good day, made some sugar cookies (well, for those of you that know me well, I opened the pillsbury package and sliced the cookie dough) and Alison decorated them.

We get our blood work tomorrow morning to see if her counts are up (cross your fingers). That way we are only 3 days behind on our chemo. If not we have to wait until next week, which would put her a week behind on her chemo.

I do want to apologise that I have been totally behind in submitting "thank you" cards to a lot of you. Alison has received so many gifts in the mail and through relatives. I would like to acknowledge each and every one of them.

Thanks so much,
Chrissy

September 24, 2002

Alison is doing well. Today we were supposed to be getting Vincristine, Doxirubicin and Cytoxan today, but her counts still aren't high enough.

I just set up this page tonight. The previous entries are from a journal that we kept for ourselves. I didn't edit anything out, so if there are alot of references to constipation... Anyhoo, I wanted to create a site so that family and friends could be updated on Alison's treatment. I know that some people have a problem with calling and asking questions, which I really don't want anyone to feel that way. I hope that everyone will sign her guestbook also. Most importantly, please say a little prayer for Alison.

I have also posted some recent pictures.

Thanks,
Chrissy

September 21, 2002

We went to the Zoo today. Alison had a good time. She loves to look at the zebras. Her goal for today… look at the zebras, then get a soft pretzel. She did both, plus ate a soft serve ice cream. Daddy carried her around the whole place in 90 degree weather. She actually let me take some pictures of her (something we have had a hard time with). I love to see her smile!

September 20, 2002

Alison still getting her GCSF shots at home, her home *nurse is wonderful. She hates those shots, I can’t really blame her. She is enjoying playing at home. She really gets excited when her Daddy comes home from work to play with her. I think that makes her day. Mommy can’t play the same way that Daddy plays. Still worried that her counts won’t come up enough to get the next round of chemo. Gave Alison a haircut because “long hairs” are getting in her food and mouth. She looks absolutely beautiful!

September 18, 2002

We had Alison baptized today. She wore a dress that belonged to her Godmother when she was a little girl. We kept putting off getting her baptized when she was an infant, felt the time was right to get it done. She, of course, wasn't sure what to expect. During the baptism, she would ask, "Am I baptised yet?" All in all, everything went well. To top it off we were able to leave the hospital after the baptism, her counts were up. My nephew Eric was the Godfather, and Mikes sister Suzie was the Godmother. Alison is doing well. We are starting to find many hairs on bed sheets.

September 13, 2002

Went to Childrens ER. Had been running a low grade fever all day. I found out that this is somewhat normal when a person's blood counts are this low, it is called neutropenia (I think I spelled that correctly). Needless to say they wanted to keep her. They put her on antibiotics during her stay. She bottomed out on her ANC counts, could not leave hospital until counts were above 500. Normal counts are 10,000.

September 11, 2002

We have a visit from our new home nurse, thanks to sister-in-law Suzie, to administer the GCSF. Mommy so happy that she doesn’t have to give her daughter a painful shot, wants to be source of comfort, not pain. New home nurse* is very kind.

*didn't want to use names of people other than family, wasn't sure if they would appreciate it. I do want to acknowledge them because they have been very kind and helpful.

September

Daddy takes Alison to the clinic for Vincristine shot. Mommy feeling a little under the weather.

September 9, 2002

Go back to Childrens to visit Urologist. Doctors said that Alison is healing fine, took off remaining tape from surgery(which was just about all!!) Later that evening, had trouble flushing Alison’s broviac, headed back to Childrens ER hoping that they would not have to replace the line (that would mean another surgery!). The nurse there fixed the problem, said probably a little clot clogged the line.

September 8, 2002

Go back to Childrens to administer the first GCSF shots, they want to make sure that Mommy knows what she is doing. Well let me tell you, that is the hardest thing I have ever had to do to my child!! I simply hate it

September 4 -7, 2002

Back to Childrens for C & E every day, roughly 12-14 hour days, including traffic. Nurses very nice in infusion room. Very long week. Alison is enjoying playing with Daddy every day. Should I say that Daddy is enjoying playing with Ali every day. Says she likes the infusion room.

September 3, 2002

Had our first Cytoxan and Etopiside. Very long day at Children’s infusion room. Took a truckload of toys. Daddy and Ali had many hours of fun playing. Mommy got much needed sleep in “super” comfy chairs, ha. Learn that we have to give these GCSF shots at home after this round of treatment is over, did NOT plan on this!!! These shots boost Alisons WBCs into action.

August 29, 2002`

Radiation #6. Final. The people at NIH have been so kind. Nurse in recovery room gave Alison a balloon and a little stuffed Clifford. Alison had been telling her that she loved Clifford a few days before. The doctor gave her a gold dollar. Those doctors and nurses there are wonderful, very caring.

August 28, 2002

Radiation #5. Very bad day!!!! Very rainy, traffic bad, we had chemo today also. Weight 17½ kg. (38 lbs.) down from her original 43 pounds. Oncologist visit: The worse keeps getting worse! Alison is NOT stage 2 focal anaplasia, she is stage 3 diffuse anaplasia, much worse. 67% cure rate. I hate the numbers/statistics. Many more chemo treatments, harsher chemicals. I would do anything to stop this nightmare. Ali had two tumors, one large favorable tumor and one smaller 2 cm diffuse tumor. Oncologist has never seen this before. Also found tiny number of cells in lymph node (just one); not sure if favorable or unfavorable. 1% incidence of secondary tumors 10 years after treatment. Do you think we could get some good news here??? I HATE CANCER!!

August 27, 2002

Radiation #4, 7:45 am. Went well. Ali very tired today, but still playing. Early mornings are difficult. Her spirits are very high. She does ask questions about other kids being sick. Are there any other sick kids here? Are lots of kids sick? We tell her there are lots of sick kids. Also tell her that her illness is very rare. And that the doc’s are going to fix her up. Explained that she has an illness. She is not sick. Her illness makes it easier to get sick so we have to be careful for several months. Being careful means washing our hands more often, not going too many places, and not seeing too many people. She is taking this all very well.

August 26, 2002

Radiation # 3. Ali doing very well. An incredibly brave little lady. Such a beautiful smile. Ali came out of medicine sleep slowly today; awoke quickly but very poor depth perception. Ali took her 1st nap since this all started today, much needed.

August 25, 2002

Constipation still a problem. Otherwise doing good. We had a nice time playing all day. Daddy geting used to being with her all the time. He would quit his job if we could afford it! I think he will be trying to talk me into going back to work in an office.

August 23, 2002`

Radiation #2. 7:45 am Alison wide awake this time, needed more medicine. Everything went smooth. Alison says her tummy hurts. We suspect constipation. Wakes up crying at night saying that her tummy hurts. Hot water bottle seems to help a lot.

August 22, 2002

1st radiation 7:45. Ali slow to recover from meds. Given a sedative and anti-nausea meds in addition to sleeping meds. She remembers nothing from the am. The nurses at NIH are very kind. Ali’s spirit good, says she has in tingling in her feet on way home. Enough to cause pain. Is on of the side effects of Vincristine. Seems a little unsteady

August 21, 2002

2nd chemo dose today. 11:00 am Childrens Hosp., get it around 1:00 pm. Ali finally gets stool moving (Yahoo). Treatment goes well, a brief injection of Vincristine. No nausea medicine needed. We go home and play. Ali happy, a little clumsy

August 20, 2002

After short nights sleep. 9:30 am meet with anesthesiologist. A relief, we did not want to do mapping without Ali being put under. Mapping (I think, I am so new at this) is when they focus the rays on a particular site on her abdomen, want to make sure getting the correct area. We want her in the same state that she would be in for treatment. Mapping would be more accurate. CT scan went well (11:00 am start). Daddy held Ali as she was just barely put to sleep. Daddy was back in room before she awoke. Mommy stayed away from the machines since she is with child. Went to recovery room, she was dizzy, spirits good. She slept in Daddy’s arms. Went back to Children’s, said we needed some blood before we could go home, got a 4 hour blood transfusion. Got trained on Broviac (port in chest used to administer chemo) care. Ali is constipated, tried medicine… too nasty… ruined her for all other oral medications for a lifetime (probably!). Having lots of pain (constipation related). We get home around midnight, 1st night at home in a week, feels good to be home in your own bed.

August 19, 2002

We go to NIH to meet with radiologists and anesthesiologists. Met with radiologists. Waited around for a couple of hours for anesthesiologists, did not get to meet with them, have to come back tomorrow... very frustrating.

August 18, 2002

Not to peppy today. Had morphine to help sleep last night. Went to playroom until 12:30-1:00 am. Morphine at 4:00 am (last dose). Taken off IV mid-afternoon. Tylenol suppositories for pain 5:00 pm and 11:00 pm. Ate toast no problem. Getting her appetite back a little.

August 17, 2002

Ali slept good. Taken off oxygen in the morning. Oncologist stopped by again to discuss our future long term risk. Ali enjoyed herself today. Started ice munching, apple juice, and Popsicle. Mostly from 12:30 until 4:00 pm. Held all down. Went to playroom, too much pain.

August 16, 2002

Concerned about oxygen levels. Seem to have “most” problems when sleeping. Bumped her oxygen to 2.0 when sleeping, finally went down to 0.5. Dr. Pain thinks he will take her off morphine in the morning. Got oncology results:
Good news/bad news… Mostly good.
Not stage III as feared… Stage II
But… unfavorable histology, focal, not diffuse anaplasia. Slides also sent to Chicago (Wilms expert pathologist) for 2nd opinion, comfortable with 1st opinion). Unfavorable is uncommon. In for 24 weeks and additional chemo and also radiation, which increases risk of secondary cancer. Bottom line 92% cure rate. At this point, we’ll take it.

August 15, 2002

3:00 am get to our room. Alison sleepy. Alison on Morphine, can get additional demands or boosts every 10 minutes or so.
8:30 am Urologist visits. No liquids until bowel movement (or sound). He said could take up to 48 hours. Maybe ice chips tonight. He did okay the swabs to moisten her mouth. They did want Ali to move (so soon after surgery… seems kind of cruel… I know it is for the best) and to do breathing exercises. Also moving will help bowels move faster and speed up after effects of anesthesia. Told to do breathing exercises every 10 minutes when awake. Yeah right.
9:30 am pain nurse visit. Alison received 9 demands through the night, not too bad. She received a demand before she was to move. Daddy told nurse that Alison said that everything was crazy. If dose was too high, she could hallucinate. Doc thought she could be seeing stuff if hallucinating. Morphine might make her itch, as it did when her arm was broken a few months ago (this girl has had a rough year). Could put on benadryl if needed.
10:00 am Ali sleeping a lot. Wakes up occasionally (every 30 minutes or so) asking for water or juice. Of course we can’t give her anything. She attacks mouth swab like it is a tall glass of water.
4:50 pm Ali’s oxygen level very low, dropped in the 60s. Nose area turning blue. Said she couldn’t hear. Lasted for a few minutes (oxygen levels going up and down). The nurses gave her oxygen and levels maintaining at 99/100 (@5:15 pm) She went back up with oxygen but then began going down again. Nurse had to turn up oxygen to 3.5 (from 2 or so). Some concern she may develop pneumonia if she doesn’t move. Nurse to talk to pain doctor about switching to something other than morphine. Take away drowsiness so that she will get up. Ali had a really tough night, clung to Mommy. Alison very much a Daddy’s girl, unless she is feeling really bad.

August 14, 2002`

12:30 pm report to hospital for 2:30 schedule surgery, no food that day and no fluids past 11:30 that morning.
8:30 pm Alison goes into surgery later than anticipated (poor thing fasted longer than needed). Again she falls asleep on Daddy’s shoulder just before procedure. Because of late hour we can’t go in with her as she is put under (we told her we would be with her until they put her to sleep [i.e. made her flopsy]). Daddy explains to Ali that we can’t be with her when they put her to sleep, she is okay with it. No shot; just some gas. We wait outside door until given sleeping medicine. This most definitely longest night of our lives. Aunt Suzie, Aunt Angela, Aunt Jackie and Dean wait with us in waiting room.
11:00 pm nurse says right kidney out, did not do biopsy of left kidney (good sign). Urologist was going to do biopsy if the kidney looked suspicious. Kidney sent to pathology… 24-72 hours for results.
11:50 pm Urologists come by. Surgery went fine. There were a few suspicious looking lymph nodes sent to pathology, not what we wanted to hear. There was a little spill that they feel that they contained. Had a little blood loss, not enough to warrant extra blood. It is very possible stage 3 if there is lymph node involvement. Stage 2 otherwise, due to spillage. Wait for pathology report. Wait for Monday to confirm stage and histology. No staples used to reseal skin just tape.

August 13, 2002

Return to Childrens to get CT scan. Alison also got more sonogram pictures to look to see where blood feeds to kidney. Could not find Inferior Vena Cava (main feed vein). Some people don’t have these they tell me, body lays down new veins. Seems like a pretty important vein to me… Tried to find alternate veins but could not see with sonogram. The doctors seemed satisfied with results, say that they will have to find veins during surgery. Alison had to drink a lot of apple juice with barium for CT scan. Another doctor saw Ali in sonogram, was impressed with her behavior, decided not to put her under with CT scan (a relief). Drinking juice was tough, she has a stubborn streak at times. She fell asleep in Daddy’s arms. Laid her down for scan and she slept through entire exam. Great results, does not look like cancer in lungs. Not likely a stage four.
Stage 1 or 2: best outlook
Stage 3 or 4: progressively worse, stage 4 pretty much ruled out by CT scan
Histology also important: changes cure rate from 95% to 85%.
Chemotherapy is to start 5 days after surgery and before release from hospital. 10-14 weeks chemo likely.

August 12, 2002

Called Childrens Hospital first thing Monday to get an appointment and couldn’t get one until Friday. As soon as I hung up the phone, Alison’s doctor calls me to see if I had an appointment. Told her the situation, she calls back with an appointment time at Childrens to see Urologist. We get to Childrens said she more than likely has Wilms Tumor on right kidney. 98% cure rate, some chemo, no radiation.

August 10, 2002

We go to hospital at 11:00. Technician says right kidney quite a bit larger than left. Said it was good we came in. Took many pictures of right kidney, maybe 1 or 2 of left and 1 or 2 of bladder. We knew that something wasn’t right. The technician couldn’t tell us anything. Called the hospital later that day to make sure that they faxed over the results to Childrens Hospital.

August 9, 2002

Called doctor (at least 5 times), urine still very bloody, can’t wait until Tuesday for sonogram. Always be a squeaky wheel when it comes to your children. The doctor calls back and gets appt. for sonogram for tomorrow (Saturday) at local hospital and told me to call Childrens Hospital Urology dept. on Monday to get a same day appointment. Blood came back negative, all results normal, hemoglobin a little low (more than likely due to blood loss in urine)

August 8, 2002

Call regular doctor to get appt. Told nurse that urine very bloody with bactrim, told to come right in to office. Take very bloody urine sample. Had to get another (more sterile) sample at office. Less bloody looking, had some clots in it. Doctor gives us a referral for lab work & sonogram. Thinks it is some kind of leftover effects of cold or strep infection, but Ali was not sick!!

August 6, 2002

Alison looks at her pee pee in the toilet and says “red”. Daddy looks in the toilet, pee pee slightly red. Mommy calls nurse help line. The nurse tell us to go to go to the hospital ER. We go to the hospital, they believe it to be urinary tract infection (UTI). They take a urine sample, it is bloody. Doc said to wait 1 hour for urine culture. Came back 1.5 hours later, said we needed bactrim to treat UTI. Learned later in week that culture came back negative.

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