History

Friday, April 7, 2006 9:28 PM CDT

Well, another round of tests done! We were so proud of Alyssa today!!! She did fantastic! Of course, we had a hard time getting her to drink the juice/contrast last night. She wined all the way this morning in the car on the way to CHOP that she wanted apple juice, but she couldn't have anything to drink. Well, after telling the nurse that she doesn't do well drinking the juice and we might have to opt for the NG tube, she amazed us and drank the whole cup of juice (with a little bit of bribery of gifts from the wonderful nurse of a coloring book and stickers). Then, she amazed us again by having her CT scan without ANY sedation! NOTHING! She sat perfectly still (with the help of a ViewMaster Projector which daddy was holding). What a big girl!!! She got to raid the snack room after for cookies and some apple juice. It felt so nice not to have to deal with the groggness that follows sedation. We went on our way home! Follow up scheduled for Monday with doctor in clinic for the results. We thought she might call tonight, but did not hear from her.

Thursday, December 29, 2005 12:41 AM CST

The holiday season is winding down. We had a much better holiday this year than last year. Alyssa was so cute opening up all her presents this year. She lost some interest at the end so Matt ended up helping her. Matt is back to school this week due to the teacher's strike in November. The school district gave them Monday and Tuesday off, but it was back to school the rest of the week. In other news, we went to CHOP last week for a CBC and urine test. Unfortunately they ran the wrong test, so we have to go back again in January.

I hope that everyone has a Happy and Healthy 2006! We will keep everyone in our prayers.

Saturday, December 10, 2005 12:24 AM CST

Alyssa had another CT Scan on December 2. The results back indicate the lymph nodes they wanted to observe are "stable". No bigger, no smaller. So the plan is to do another urine/CBC test. Then another scan in three months. Then hopefully we will go to the six month schedule. Seems like it is never ending. But I know it is better to be overly cautious. So, hopefully sometime this week we will head down to CHOP for those tests. Then we can enjoy the holiday season. Hard to believe, this year has gone by so quickly. Christmas will be here before we know it. To everyone, we wish you a happy holiday season!

Tuesday, November 22, 2005 1:23 PM CST

It's hard to believe it was one year ago today that our pediatrician discovered Alyssa's tumor. It seems like yesterday. I can remember it like it was yesterday. It's hard to believe how your life can change in an instant. Something that seemed as innocent as getting a flu shot and an "oh, since you have to come back anyway, we want to do a weight check" turned our lives upside down. Of course, we will always be thankful to Alyssa's pediatrican for, I think, saving her life. Alyssa is doing great and has been NED for one year, since her surgery to remove the tumor.

We rescheduled Alyssa's CT Scan for next Friday, December 2. If everything goes well, we will move to every six months.

As always, continue to pray for those children that are fighting Neuroblastoma. I think and pray for them all the time.

Tuesday, November 8, 2005 1:39 PM CST

Well, we got Alyssa's urine test results back last week and they are normal. The doctor still wants to do another CT Scan on November 21st to monitor the lymph node "collection". If everything goes well, we will move to the six month visits.

In other news, we are in Day 12 (school days) of our local school district teacher's strike. It looks like right now they will be out officially 21 school days, so they will not be returning until the week of Thanksgiving. They then will have two days off for the remainder of the school year -- Thanksgiving and Memorial Day (since Christmas and New Years are on Sundays this year). It stinks. Matt is bored and I am ready for him to go back to school. The first part of the school year will be such a waste since they will probably have to "start over" when they go back to school.

Thanks everyone again for all your thoughts and prayers. We continue to pray everyday for all those affected by Neuroblastoma and all the other cancers.

Friday, October 21, 2005 1:30 PM CDT

Well, don't know if the news is good or bad...Alyssa had her CT Scan this past Monday. We received a call Monday night from the doctor that the radiologist observed a "collection of lymph nodes on her right side". Her CBC results came back fine, so that is good. It will all hinge on her urine test due to be done this coming Monday, 10/24. If it comes out fine, then she may just want to do another CT Scan in a month to just see what those lymph nodes are doing. We are thinking positive knowing that lymph nodes can enlarge for many reasons, the most common being infection...so maybe its just a cold or something coming on?

Alyssa will be celebrating her 2nd birthday this weekend with both our families. I know Alyssa will have a good time. She is just at that age that opening presents are fun. And of course, we appreciate a whole lot more this year.

Meanwhile, our local school district teachers are set to go on strike on Monday. So Matt may be home for the next 17 (school) days (the longest they can strike by state law to fulfill the required school days before the end of the school year. Its going to be a long three weeks.

Sunday, October 9, 2005 7:41 PM CDT

Well, I have not updated this in a while. We have been busy with end of summer stuff and Matt starting school. He started a new school this year -- its hard to belive he is already in Middle School. Its a big adjustment, but he seems to be handling it good.

Alyssa has her scans a week from tomorrow. Of course we all get a little nervous around this time, but we are going to keep positive.

Its hard to believe she'll be 2 on October 19th. Happy Birthday!!! We will be celebrating her birthday on the 22nd with our family. She is already singing Happy Birthday to herself, although she only gets out the happy part.

Will update after the scans to let everyone know how it went.

Wednesday, July 13, 2005 12:42 AM CDT

Well, we went to CHOP on Monday for her 3 month check up. What a day. Of course nothing can be easy...poor baby had to be stuck 3 times for an IV for her CT Scan! While we are holding her down! While they were doing the scan, the iv broke or whatever, so they could not give her the contrast through the iv, so they had to wheel her out and put another iv in (4th time) and give her more sedation to get her back to sleep. So, she slept more than normal and was pretty groggy the rest of the day. The doctor called that evening with the results of the scan and said everything looked good -- no evidence of reoccurance! We still have to see her on Monday for her follow up and wait until the next three month scan...of course, we can't wait until the scans go to every six months, then once a year!

Tuesday, June 28, 2005 6:48 AM CDT

Well, what a day we had yesterday. Alyssa was scheduled for her regular three month CT scan yesterday. She has to drink the contrast the night prior with nothing to eat ordrink until after the test the next day, so we try to get the earliest possible time. Our appointment was scheduled at 9:30 am and we are supposed to arrive at 8:45 am...we were there at 8:30 am. By 10:00 am we still were not called and Alyssa is beginning to not look well. It is not typical of her to be sleeping on either one of our shoulder's. Well, she then threw up the not much in her stomach. They had a nurse look at her (we had to reschedule the CT Scan for two weeks from yesterday) and sent us home to follow up with our peditician. We called the doctor from the hospital to get her in that afternoon. She had a little something to drink before she left the hospital, but was more or less asleep. She promptly threw up all that she had to drink on the way home and at home. By the time she was seen at the peditician, she was dehydrated, so we were sent to the local hospital for IV fluids. She slept on the way there, but after getting there, about 15 minutes later, she suddenly perked up and started drinking and eating. She was a totally different child, but of course we were having flashbacks from Christmas time. So unfortunately, we have to go back in two weeks for her CT Scan and go through the process of getting her to drink the contrast the night before, not eating or drinking the next morning, etc.

Wednesday, June 22, 2005 8:53 PM CDT

Well, its been a while since I gave an update. Alyssa is doing well. We go for her next 3 month CT scan this coming Monday, June 27. Of course, Marty and I both get edgy around this time. We know she has a hard time drinking the yucky contrast mixed with juice and its such a long morning.

Everyone here is enjoying the summer so far. Matt finished up school last week. Hopefully we will get some day trips in to the zoo, Sesame Place and the beach! And a couple of weekend camping trips too. Alyssa will love them all. She loves being outside. I can't wait to see how she will be at Sesame Place this year! She loves Elmo and Zoe...she sleeps with them every night. She loves the pool -- which can be kind of scary. I have to keep my eyes close on her when we are at the pool.

Wish us luck next week at CHOP.

Monday, May 2, 2005 12:40 AM CDT

Alyssa has been doing well. An active 18 month old. Her last well baby check up with the pediatrican was a few weeks ago. She officially hit the 20 lb mark (20 lbs. 9 oz). They are happy with her progress (she is back on the charts after surgery, then a rough Christmas with a stomach virus). Alyssa has been keeping us busy. She loves being outside. She hates to come in. The weather is warming up nicely to spend some days outside, so I don't mind. She has started to talk more and amazing us after she repeats a new word she has just heard. Of course, she continues to repeat her big brother's name...MATT (sometimes all day long). She will go back for her next CT scan in the next month or month and a half. We will keep everyone updated.

Thursday, March 24, 2005 1:30 PM CST

We had a long day on this past Tuesday. Alyssa had her CT Scan Tuesday morning and then we saw her oncologist in the afternoon. It made for a very long day. She was very cranky and irritable the rest of the day from the sedation. The preliminary results of her Scan look good. Her CBC counts from two weeks prior came back good. All good. Alyssa is still NED! Of course, Marty & I always worry as the scans come get closer. It gives me more piece of mind to have them every 3 months at this point...it makes Marty nervous. But I think we gain more knowledge as we travel this road. Marty was having a fit that the nurse wanted to take Alyssa's blook two hours after she had her IV removed. (She had blood taken two weeks before...she did not need it again). But for next time we will be prepared that she will have to have a CBC (which we can ask to have drawn at the time she has her IV inserted) and her urine test (which I can do the night before and bring with me). She will have her next scan at the end of May but I think this time we will schedule her oncologist appointment the following week. Its too much to do all in one day.

Saturday, March 12, 2005 8:34 AM CST

Alyssa went to CHOP on Tuesday of this past week for a check up with the oncologist. She is doing great! The doctor likes her progress...her weight gain, her tummy feels good. If everything goes well with her CT Scan on the 22nd, she will not have another one until the end of May.

Thursday, February 24, 2005 9:49 AM CST

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Thursday, February 24, 2005 9:49 AM CST

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Friday, February 25, 2005 8:08 PM CST

Alyssa was diagnosed with Stage 2B Neuroblastoma in November 2004. Since her pediatrician did not like her weight gain at her 12 month check up, they wanted us back at 13 months for a weight check. At that visit, she lost weight (much to our dismay, since she grazed all day long), so when he did an exam and came across a lump. He sent me to the hospital for blood work and an ultrasound (I had no idea at this point what he had found). When the technician said the pediatrician wanted to see me back in his office, I knew something was wrong (thinking all the way back, she swallowed something that was left laying around). When the pediatrican told me he found a lump, it still did not hit me (in fact cancer never even crossed my mind...I thought maybe it was the hereditary spheresytosis that Matthew & I both had, but it was dismissed). He wanted us to go to CHOP the next day. It was not confirmed that it was neuroblastoma until a week later when they operated to remove the tumor. They did a bone marrow aspiriation while she was under (those results came back within days that it had not spread to her bone marrow..which we were estatic about). We definitely were not prepared for this diagnosis (is anyone?). It hit us like a ton of bricks. A lot of that week in the hospital was a daze, still trying to process what had happened. The week after her surgery was filled with tests...a bone scan and MIBG to see if it spread. When we received the results the week before Christmas, we were thrilled and very thankful that it had not spread. The doctors told us she would be watched closely with CT scans.

Christmas 2004 Alyssa had a nasty stomach virus, which she spent part of the weekend in the hospital for being dehydrated and New Years weekend, she experienced 2 seizures (while away in the poconos)(which the doctors called breath holding episodes). Both were very emotionally and physically draining but again we were thankful that it was nothing more serious.

Alyssa's first post op CT scan in January came back good with good results. She will continue to be seen by oncologist every month...

Thursday, February 24, 2005 9:49 AM CST

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