Journal History
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Tuesday, May 16, 2006 10:56 AM CDT
Hi everyone! Michaela had her 5 year scans last thursday and everything is ALL CLEAR!!!!!! YAY!!!!!!! She also saw her endocrinologist who increased her growth hormone medication just a little bit. She has grown 2 inches since August, but is still a little on the small side. She is at 25% for both height and weight, so the doc decided to increase it just a little. We're still not sure how long she will be on this medication, but I can only assume it will be quite awhile since her pituitary gland doesn't function anymore. All in all though, since the damaged pituitary was the only complication from the radiation -- we are one lucky family!
For those of you who don't know, Michaela is going to be a big sister again! I am due on Oct 20th, the day before Michaela's 10th birthday. She is really excited :) Michaela would like another sister, and Katie would like a brother. We'll see who gets their wish.
Sunday, July 31, 2005 6:01 PM CDT
Michaela is due for more scans and blood work on August 4th. She is doing really well, growing like crazy with the help of the medication she is on. She is enjoying her summer with her sister and is looking forward to 3rd grade. Its really hard to believe that she is just about to be a 3rd grader. She spends her days playing outside with her sister and neighborhood friends, most of the time either on her bike or in her playhouse. I will post new pictues soon!
Wednesday, March 30, 2005 8:26 AM CST
Hi everyone,
I looked at Michaela's page today and realized I haven't updated it in nearly 3 months! I guess that is good in a lot of ways... it means things have been quiet, which is a very, very good thing. Michaela's nutropin dosage was increased recently and she has a follow up appointment in April to see how the new dose is working for her. I will be sure to update everyone on that!
She is doing very well in school, enjoying 2nd grade. She comes home in the afternoon and after homework, she plays with her friends in the neighborhood until mom calls her in for dinner. Katie is doing very well too, growing like crazy. She turns 6 in May. The cliche is so true -- where does the time go??
Take care all and I will be updating again soon!
Thursday, December 30, 2004 7:21 AM CST
Hello everyone! I wanted to take a few minutes to update the web page. Michaela had scans in Oct, and they turned out well. The only strange thing was her lipid levels were high -- Dr. Steiner thought that was a side effect of the growth hormone. Andy brought her to see Dr. Petryk the endocronologist last week. She is up to the 25% mark on the growth chart. This is pretty good considering she was at 0% before taking the medicine!
Her dose has been increased, so I expect to see her shoot up ever more -- even faster! For now this kid is skipping shoe sizes shes growing so fast..... we'll see what happens with this increased dose. She is doing very well in school, her favorite subject is math -- she must have gotten that from her dad! Happy New Year everyone.
Wednesday, October 27, 2004 9:11 AM CDT
Michaela's scans were done October 25th. I got the call early last night that the results are back and everything looks great! We can't ask for much more. Her growth hormones seem to be working pretty well too. Since she started them last November, she has grown more than 5 inches and gained a little more than 7 pounds. She's up to a size 6X now -- not to bad for an 8 year old! :)
The only issue we have is her bloodwork was a little abnormal. Her lipid levels are high. These are things like her good and bad cholesterol. They shouldn't be high for a kid her age, but its a result of her growth hormones. So, we are going to see Dr. Petryk, the endocronologist to get things tweeked a bit.
Other than that, things are moving right along. Katie is loving kindergarten and Michaela is doing great in 2nd grade. They are both looking forward to halloween where Michaela is going to be Snow White and Katie, appropriately, is going to be a witch! We hope all is well with everyone, thanks for checking up on Michaela!
Thursday, September 9, 2004 1:49 PM CDT
Michaela and Katie started school this week. Michaela is a big 2nd grader -- it's hard to believe! Katie started kindergarten and is just so proud of herself. It is really cute to see them so excited to go to school every day!
Michaela is scheduled to have another MRI on Sep 28th, just a routine appointment. Her growth hormone shots seem to be working very well :). She is growing quickly -- her shoe size has gone from a 12 to a 1 in 3 months! She just skipped right over size 13.
Things at home are settling down. Andy has purchased a town home in Forest Lake and will be moving in later this month. The girls and I are staying at the house, which they are happy about so they can stay close to their friends. I think everyone is adjusting very well. Check back and I will post an update when we get the MRI/CT results!
Wednesday, May 12, 2004 7:10 PM CDT
Michaela had her scheduled MRI and CT scan on Monday. As most of you know, her last set of scans were in January, and the results were not what we'd hoped. I got a call from the hospital today, they said all the scans, and her bloodwork were "Great"! (Huge Sigh of Relief!) Her next set of scans are scheduled for August 30th.
She recently lost a tooth at school, and was pretty proud of herself when she came home showing me the envelope she was storing it in. The tooth fairy came to visit, and she is saving up for a new hamster, as her "Oreo" recently passed on.....
Katie is getting ready to graduate from Pre-school on May 20th. She then turns five on the 25th. It seems pretty unreal. She is a smart cookie, some of the things she says just stop me in my tracks.
Thanks for keeping tabs on the girls -- I'll keep you updated!
Thursday, April 15, 2004 3:41 AM CDT
The girls had a fun Easter! They spent the first part of the day with their dad at Grandpa Knutson's house. They made it to Grandma Zerwas's at around 5 pm. Then, they made a killing during the Easter egg hunt :). They both found their baskets in record time, as well.
Michaela is doing great with her hormone shots. The last visit in Feb showed a growth of 2 inches since November. We need to see the endocrinologist soon, I am excited to see how much more progression she's made. I know it will be impressive, the pants she got for Christmas don't fit anymore!
Katie is finishing up pre-school. She enjoys it very much. Its hard to believe she is going to be in kindergarten this fall. She will be turning 5 soon - May 25th. She is still my little hand full.
Take care all and thanks for checking in on Michaela!
Thursday, March 4, 2004 2:34 AM CST
We returned from vacation on Feb 29th. The girls had a very good time. We spent 4 days with their Nana Vickie, then on Tuesday we drove to Anaheim, CA. We spent three days in California visiting Disneyland and Sea World. Then, we went back to Tucson for a couple more days. Michaela said it was the best time of her life. That was pretty special, especially considering all she's been through lately. The weather was sure nice! Average of about 65 degrees and sunny -- and they call that winter -- Ha! Now back in beautiful Minnesota, in was snowing today. Back to reality I suppose. Thanks for checking up on McPoo!
Sunday, February 22, 2004 5:45 PM CST
Just a quick update for those of you checking in on Michaela. We are on vacation visiting Andy's mom in Tucson. We have been here since the 20th. The kids are having fun playing with their cousins, Andy's sisters kids, that live down here. We have planned a trip to California from Tuesday to Friday. We plan to take the kids to Disneyland and Seaworld. It will be especially meaningful this time with Michaela. To think that earlier this month she was enduring a 2 hour surgery to see if her cancer had returned, to now knowing she is still cancer free, and going to be having the time of her life in California -- well, its simply amazing. Thanks to all of you checking in on her.
Friday, February 6, 2004 11:19 AM CST
Now this IS the update we wanted!!!! All test results are in --- and they are all NORMAL~!!! I can not even begin to put into words how relieved we are. Its hard to describe to people whos kids have not had cancer that any abnormality tends to put a person completely over the edge. I haven't been that scared in a very long time.
Apparently there is such a thing as "thymic rebound" that occurs with chemo kids at six months post treatment. This is the first time they (the teams of docs) have seen "thymic rebound" at 3 years post treatment. Her Onc even told us she wants to document this in medical literature so that other docs know this can happen. I'm all for that, I'd hate to see other kids go through that biopsy procedure.
We are home now, and Michaela is doing very well. They took the chest tube out yesterday around 11:00, and she bounced back almost immediately. After about two hours she was fighting with her sister again, so we knew she was feeling pretty good :).
It was very surreal being in the hospital again with the staff we got to know so well. When we left yesterday, we said goodbye and we all told one another that we hoped we didn't see each other again. Now, with the results coming back today, I'm thinking our hope will be reality. Thank you so much to all of you who were sending good thoughts her way.
Tuesday, February 3, 2004 9:16 AM CST
Well, the re-scan was done. The enlargement hasn't changed. No smaller, no bigger. Smaller is what we were hoping for, then we could've chalked it up to an enlargement due to a cold she was fighting. Apparently it isn't going to be that easy.
She is scheduled for a biopsy tomorrow, the 4th at 1:00. Her Oncologist wants to get a piece of the Thymus to ensure its not cancerous. They freely admitted that they are stumped. She told us that the enlargement is very odd. She went on to say that only once in her twenty plus years has she actually seen thymus cancer. Well, with Michaela having Rhabdo at age 3, we aren't people who put a whole lot of stock into statistics.
They will have a "freeze test" that they will do immeadiately upon getting the biopsy. They take a piece of the tissue and put a chemical on it and it gives a positive or negative as far as malignancy is concerned. Its about as accurate as a home pregnancy test, so of course after getting the initial test result, the tissue still makes its way to a pathologist. Which of course, will take more time. This wait is enough to drive a person crazy. So, again, while we may not be overly religious types-- prayers for her are greatly appreciated. Hopefully this will be nothing, and we can chalk it up to a good scare.
Monday, January 12, 2004 10:39 PM CST
This is an update I am not happy about writing. Michaela is so far post treatment; she should be getting scans (an MRI and CT scan) once a year. Since she started growth hormone shots, and they are unsure how a pediatric patient who went through chemotherapy will react to hormone shots-- she is still scheduled to get the scans every three months.
With that said, she has been on hormone injections since November. Today it showed she has grown an inch since she started them. Pretty good for a kid that didn't grow at all the previous 18 months. She had her normal; routine scans done on the 5th of January. We were back at the cancer clinic today with her because we were advised her chest CT scan was abnormal. Her thymus gland is enlarged. I asked if it was enlarged slightly or dramatically, and they said it was "in between".
Michaela's primary oncologist, who has been there since day one, was there for us again today, trying to explain this enlargement. She admitted she can't explain it. She gave us many scenarios. She told us that it could be enlarged due to a cold Michaela, and the whole family, has been fighting for the past three weeks. It could also be a symptom of Hodgkin’s disease, a secondary tumor growing in the gland, or a reaction to the growth hormone.
So, the plan of action is to sit and wait. Feb 2nd, Michaela will go in for another CT scan. We will wait for the results at the hospital. If the thymus is still enlarged at the same level or larger, they will do a biopsy of it that day.
So, we sit and we wait. I guess my concern is that she has had perfect scans for almost three years. The endocrinologist that started this hormone medication told us that one risk was regenerating residual tumor growth, but she clarified that this was a very, very small risk, almost non-existent. So, now that she has her first post hormone injection scans, they are abnormal.
I am trying to remain positive and concentrate on the enlargement being secondary to her current cold. I can't imagine her being sick again. She is doing so well. It just can't happen again. So maybe everyone can say some prayers for her now and again. I will update everyone as soon as I can.
Jen
Saturday, December 6, 2003 10:00 PM CST
Hello everyone! I thought we were over due to add a journal entry and let everyone know how Michaela's shots are going. She began the shots in early November. She gets a daily injection of Nutropin to help her grow. The Nutropin is esentially a synthetic hormone. Her pituitary gland was damaged during radiation treatments and is not producing enough growth hormone. The doc told us she would be taking this medication daily until she is about 14 to 16 years old.
She was a little scared at first, but she got over that quickly. It is a little tiny needle that is given through a pen-like device. Michaela herself prepares the device by prepping the needle, dialing up the right dosage, and putting the pen attachment on. She would give herself the injection too, but she doesn't quite have the thumb strength yet. The injection site changes daily rotating between both legs, and both arms.
We recently went to her confrences at 1st grade and her teacher tells us she is doing wonderfully! She is one of the best students and learns very quickly! It is fun to see her so excited to go to school every day. Katie is doing well in pre-school too, but she is anxious for kindergarten so she can ride the "big bus" :).
Thanks for checking in on Michaela! Wishing everyone the best of holiday seasons!
Love,
Jen, Andy, Michaela and Katie
Friday, October 31, 2003 9:12 PM CST
Happy Halloween everyone! Michaela and Katie went as the Barbie Cheerleader twins. They were very cute if I must say so myself. I will post a new pic of them in a few days. I took Michaela down to the University yesterday and we got her medication, the Nutropin. They had to show us how the pen device works, it seems pretty neat.
Michaela is not one bit happy about the fact that she's getting a shot every day, but I think she will learn to live with it. She will get .8 grams of Nutropin daily, until she is roughly 14 or 15 years old. The dosage is subject to change depending upon how she reacts to it, when she reaches puberty, etc. The good news is that our fears of the growth hormone stimulating any residual tumor are unfounded!
The doctor told me that the growth hormone is actually very good for people in a number of ways. Apparently if anything, it will decrease her risk of relapse, strengthen her immune system, and benefit her in numerous other health related ways. So, needless to say, that was very good news, and a HUGE relief! She will still get MRI's every three months, for the first couple years, then it will be discussed again.
Right now, Michaela is the height of your average 4 year old, and she just turned 7. On the growth chart for 7 years old she is under the 5% range. Prior to any cancer treatment she was consistantly in the 95% range for height. So, she will see the Endocrinology doc every 3 months to see what her progress is, and I will keep everyone updated!
Tuesday, October 21, 2003 10:04 PM CDT
Michaela turns 7 years old today! :-) I can't believe she is seven already. We celebrated her birthday on Sunday with friends and family. She scored big time with many really nice gifts! She was very happy. She had a great time!
We got the final word from her Endocrinology doctor. She will be taking a growth hormone medication called Nutropin. This will be a daily injection she takes until she is an "adult height", I'm not quite sure what that means. The medication is pathetically expensive. Roughly $5000.00 every three months. Insurance is covering most of the cost, so we are thankful for that.
What bothers me is the overall cost. I just don't know how that can be justified. $20000.00 a year for her medication. Its no wonder everyone's insurance premiums are so high. She will also start getting MRI's every 3 months again instead of once a year. A side effect the Doc is concerned about is that the medication will stimulate any residual tumor to re-grow.
Dr. Petryk said there isn't any medical evidence that supports that concern, but it is still something they get concerned about, so they watch it closely. When I told Michaela about the daily injections she looked up at me and said "Are you for real??". I had to stifle a laugh, she is getting so big. She is under the 5% range for height now, so the treatment is certainly necessary.
In the overall sceme of things this is just a minor inconvenience. She has been through much worse, and come out a survivor, so she will conquer this too!
Tuesday, October 7, 2003 5:45 PM CDT
Well, I have been hesitating to write this post, waiting for more info. Michaela had her test, which took about 4 hours. They drew blood every 15 minutes and analyzed all the samples. Her hormone level is at 4.5, and 10 is normal. The pediatric endocrinologist told us that she will need to start a hormone regiment of some type. The specific's aren't completely clear, as far as what med's she'll have, how often the med's will be taken, etc.
They told us if she did not have the therapy, she wouldn't get much taller than the 3.5 feet tall she is now. If we do start the treatment, she will have to get MRI's every 3 months because of a concern that the hormone therapy may stimulate any residual tumor left in her head. There is a spot that is very, very small that is still there, that is either dormant tumor tissue, or scar tissue. It hasn't changed since 2001. Needless to say, I was sick to my stomach when I got this news, couldn't sleep for a couple days, basically started having flashbacks of 3 years ago.
After much thought, it has been decided that she will go through hormone therapy treatments, until she is a "socially acceptable" height, ie: 5 feet tall. By that time, she will likely be old enough to decide for herself if she wants to continue the therapy. We have one more appointment with Dr Petryk to decide on all the specifics. Please keep Michaela in your thoughts, and keep thinking good ones!
Sunday, September 21, 2003 0:46 AM CDT
Hello everyone. Michaela has an appointment to see an endocronologist at the University of MN on Sep 25th. We will look at the growth issues more closely then and determine what course of action to take. So far she is loving 1st grade! She comes home excited every day, telling us about her daily events--- its very cool!
Katie is in preschool and is having a blast! The first day, she had no problems leaving mommy -- Mommy was a little sad and had separation anxiety (hehe) but Katie was fine! She loves it too -- I just hope the both continue to feel that way. I'll keep you updated after the 25th.
Jen
Thursday, August 28, 2003 2:10 AM CDT
Michaela's latest MRI and CT Scans are complete! She had them done on Monday, Aug 25th. They are all clear, so that wonderful news deserves a collective sigh of relief. She is now offically 2.5 years in remission! I always get nervous around scan time. She is doing wonderfully, and showing no signs of any relapse, but all the same, I can't help but get nervous.
As some of you who check in on Michaela from time to time, you may remember the concern about her growth the last time she had scans. She has grown one centimeter since her last check up, which was 6 months ago. I brought the concern up to the doc again and they decided to check her thyroid and growth hormone levels. As I expected, Michaela's growth hormone level is too low for a child her age, a side effect of the radiation treatment we tried to avoid by having the proton beam treatment in Boston.
Dr Steiner told us to take Michaela to an endocronologist to see what type of therapy may be needed to correct the problem. I hate the idea of Michaela getting daily shots again, but I guess we will cross that bridge when we come to it. Otherwise, her next scans aren't until next year! She has graduated to the point of yearly scans!
Its great, but of course, being the worrier I can be, it makes me uneasy waiting a full year. Rhabdo is just such an aggressive, fast growing cancer, a year seems too long. I will just watch her like a hawk and demand scans if I see anything unusual -- it seems to have worked so far :).
I will keep you posted on her growth issues -- Thanks for checking in on her!
Jen
Wednesday, June 25, 2003 9:11 PM CDT
I don't access Michaela's web page as often as I should. I pulled it up today and saw that the last journal entry was made in April! Definately time for an update. We went on a family vacation to Cancun from June 14th through the 21st. The girls had a blast! We rode horses along the beach, swam with the dolphins, went on a pirate ship, and a glass bottom boat tour.
I have some really neat pictures and will be posting a new one of the girls soon. Michaela finished Kindergarten with flying colors. She is very excited about being a first grader in the fall. She lost a tooth recently-- and was very brave about it! The top tooth she is missing was pulled due to an abcess caused by the radiation treatments-- this one she lost naturally.
Katie is going to start pre-school in the fall. We are hoping this gives her some discipline... LOL! We have two new additions to the family in the form of two grown cats. The girls baby the heck out of them-- both are humane society rescues. Both girls are going to be flower girls this Saturday the 28th, for my best friends wedding. I am also the Matron of Honor-- and Andy is in the wedding too! Its going to be a family affair :).
We hope all is well for everyone-- and if you are seeing this site for the first time looking for answers-- please feel free to email us, we met some wonderful people through their websites and would like to help anyone who needs it.
Jen, Andy & girls
Monday, April 21, 2003 2:44 AM CDT
Happy Easter everyone. The girls had a blast! Michaela found her Easter basket in the tub of all places........and Kate found hers in my closet! They looked very cute today in matching dresses-- and for those who know me well, I suppose your not surprised...... :-)
I went to Michaela's school confrences last week. She is doing exceptionally well. Her teacher told me she is one of the best students in the class, and that she is more than ready for first grade. She also tells me Michaela is a great helper and a very good listener. Now if only she could demonstrate that at home with Katie.......
Thank you to all of you who said prayers for Sabrina and her family and Sean and his family. Very sadly, Sean lost his battle as well. He was able to marry his long time love in what his mom tells us was a beautiful ceremony at the hospital chapel. Please send prayers their way, they need them. These are two amazing women who helped me very much when Michaela was originally diagnosed and through her treatment. My heart breaks for them and their families.
Tuesday, April 1, 2003 10:10 PM CST
Michaela received a special gift today. Her very own quilt made for her by the very special people at Quilts of Love. It is really neat-- there is a link at the bottom of the page that you can click to go see it. They really customized this for her!
I have a request for those of you who might find yourself visiting Michaela's page. A fellow "Rhabdo kid", Sabrina, passed away on March 17th after a long and very courageous battle that she fought for the past 4 years. Sabrina is now forever 19. Please send prayers to her mom Cathy, and the rest of her family.
Now, the monster has reared its ugly head once again. Another "Rhabdo kid", Sean, who has been fighting this evil for several years, got some bad news today. Sean was told his tumor is surrounding his heart and he has, at most, two weeks left on this earth. Please send strength and prayers to his mom Patty and his family, including his fiance.
I don't know why we are so lucky that Michaela is healthy, but I'm not going to question it. I try and remember that every day is a gift.
Jen
Thursday, March 13, 2003 3:38 PM CST
The results are in! Her scans are once again ALL CLEAR!!! That is something to be truely thankful for. Every time she complains of any sort of "normal" childhood ache or pain my mind just starts racing. I don't know if I'll ever get over that. I will probably nag her till I'm in my grave about going to the doc everytime she doesn't feel 100%! :-)
I spoke to her Onc about the growth issues and he is not nearly as concerned as I am. He said that kids grow in spurts and he feels this is nothing but a normal growth pattern. He said that in the bloodwork they check two different hormone levels to see if everything is normal, and he insists that all her test results fall into normal ranges.
He thinks we should wait until August, which is her next scheduled MRI session, to see if she has grown. I have talked to other "cancer moms" who have been through this and I've gotten advice to request an endocronologist to get a second opinion. Given how long it took for them to figure out her "sinus infection" was really a cancerous tumor bigger than an orange.... seeking a second opinion doesn't seem like a bad idea to me.
As for everything else, she is doing great. She is loving school and doing very well. She is in the top 10% of her class. Her teacher has told us what a great student she is and how helpful she is in class. She makes us very proud. Thanks for checking up on her.
Jen
Monday, March 10, 2003 9:51 PM CST
Hello everyone! Michaela had her MRI and chest CT today. We don't have the results yet, but I will update her journal as soon as we hear something. She was very brave and did really well. She hasn't had sedation for her MRI for quite some time now. We had a new nurse today at MRI and she was very skeptical about letting Michaela try it without sedation-- boy was she impressed when it was done!
The doc, Dr. Tolar, only has one concern. It was something that I was afraid of at the beginning of her treatment when it was brought up as a side effect--- and it has been bothering me lately. She hasn't grown since her appointment in September. She hasn't grown at all. The whole theory behind our going to Boston for proton beam radiation was so that it would greatly minimize the risk of effecting her pituitary gland. It looks like it may become a problem after all.
I noticed at the Christmas pagent the kindergartners had that she looked quite small compared to the rest of the kids. Michaela has always been a skinny little twig-- but she has always been tall for her age. I was surprised to see the number of the other kids taller than her. I've also noticed lately that Katie is catching up to her really fast-- and Kate is 2.5 years younger.
Dr. Tolar said her bloodwork looks good, but he said that the lack of growth concerns him too. He is going to look into her options and let us know. I will update this again once we hear the news on the scans.
Jen
Tuesday, December 10, 2002 at 12:08 AM (CST)
We finally updated the photo page of the web site. We decided to include a picture of Michaela pre-treatment, a picture during treatment, and a current picture, almost 2 years since treatment. Hopefully this will show people who may be going through this now, that our kids are amazingly strong!
Michaela is doing wonderfully in kindergarten. Her teacher, Mrs. Reed, says Michaela is one of her best students. Katie is 3 1/2 now and continues to test us on a daily basis. :-)
Andy is doing well in Fridley, and just recieved an award for a shooting incident that occured the summer of 2001. He will celebrate his 3 year anniversary with the Fridley PD in January.
I am enjoying working for Chisago City. I am happy to finally be back on the road after so many years. It is exciting to be doing what I enjoy once again. The only downside is our kids think everyone, everywhere are policemen!
Wishing everyone a healthy, happy, and safe Christmas season.
Jen, Andy, Michaela & Katie
Tuesday, September 17, 2002 at 10:55 AM (CDT)
It has been entirely too long since I updated this web page. So much has happened since May. Michaela is doing wonderfully. She had another set of scans done on Sep 9th. They came back all clear! The Oncologist says she looks absolutely amazing. He said he wished all his kids ended up recovering as well as she has. She has now been in remission for 18 months. Its unbelieveable.
She started kindergarten on the 3rd of September. She loves it. She was sooooo excited to get on the school bus. She did hesitate one bit. She just jumped on the bus and rode away without looking back! She is such a big girl now. She tells us to greet her with "good morning school girl" and "good night school girl". Its pretty cute.
Since May, I have started a new job. I am now a police officer in Chisago City. I started this job in July. I am really enjoying it. I have waited a long time to get back into this line of work, so I am excited. The girls still don't know quite what to think about it. They still look at me funny when I get dressed for work. :-)
Katie is now officially potty trained! No more diapers in this house!! We plan on rewarding her and clebrating at Chuck E Cheese's! She turned 3 this past May. She is getting too big WAY to fast!!
Andy is still loving his job as a cop in Fridley. They recently got laser radar so he and his partners are harrassing people daily on Hiway 694. :-) We are all doing very well and hoping everyone else is just as well as we are--
The Knutsons
Andy, Jen, Michaela and Katie
Wednesday, May 15, 2002 at 08:24 AM (CDT)
Her scans are CLEAR!!!!!!!! Its what I expected, but you just never know. Every time a doctor says the phrase "its a possibility but very rare" it takes on a whole new meaning. They wanted to schedule her next scans for November, but being the worry wort I am I said I couldn't wait that long and they comprimised and scheduled them for 4 months out. So, Michaela will be a kindergartner next time she gets her "pictures"-- as she says. :-)
Monday, April 29, 2002 at 08:31 AM (CDT)
Finally-- new pictures! Thank you to Steve and Lisa for taking the digital photos and emailing them to me so I could finally update her photo page!
Check out the new hairdo! We took Michaela to Kindergarten round up last Friday. I think it was more exciting for me than for her. Her only comment was that it was "kinda boring"-- too funny!
Her teeth are doing good, she is feeling great, so all is well. Her next set of scans are on Uncle Steve's birthday-- May 13th.
Thursday, April 11, 2002 at 02:51 PM (CDT)
I still haven't updated the photo page! I know I am in dire need of doing that so that is my goal this month-- to get pictures of Michaela on this sporting her new hairdo! She has had all of her dental work done and is doing extremely well. She never experienced pain with any of the procedures. In total she had 3 crowns and one tooth pulled.
We are going to kindergarten round up this month because Michaela starts kindergarten this year. We are lucky in that her elementary school is only about 1 mile from our house. I can't believe it! She is getting to big WAY to fast! Her next set of scans will be May 13th.
Thursday, March 21, 2002 at 11:21 AM (CST)
As many of you may already know, Michaela is having some long term side effects already. Her teeth are deteriorating at a rapid pace. Her front tooth is abcessed and needs to be removed. Also, three of her molars need to have partial root canals and need to be crowned. A semi-permanent crown as these are baby teeth. They are molars that is is expected to have at least another 6 years, so they have to be covered. This will be done with 4 differant appointments starting next week. I know having a front tooth missing is no big deal, and pretty common for a kid her age, but her permanent tooth doesn't look close to coming down anytime soon. It is just so frustrating to see her have to go through this now on top of everything else.
They did tell us that she could have some "dental problems" but I had no idea they would be this soon or this severe. So, for any other parents out there my new advice is to make sure you are religous about dental checks if your kids have gone through any of this type of treatment.
Wednesday February 13, 2002 2:29 PM CST
Well finally, we got the news. Michaela's scans are clear once again!!!!! Now she is 9 months into remission! The CT of the orbits showed that she still has that sinus infection, so now its up to the ENT to decide on if surgery is necessary. They have been treating in unsuccessfully for over a year.
But the most important thing is that she remains cancer free, and for that we feel really, truly lucky. She is enjoying preschool and dance, and her new haircut! :-)
Tuesday February 5, 2002 8:44 AM CST
It sure has been awhile since we put a journal entry in here. Michaela has another set of scans on Feb 11th. She is doing really well so we expect everything to be fine. She still seems to have a sinus infection (this is going on 13 months), so the ENT specialist ordered a CT of her sinus cavities. He may have to go in for another surgery since all other methods of trying to treat this have failed.
Michaela got her 1st haircut last night, and she looks just beautiful! She had it shaped up a little and looks just like a little princess. She wasn't to keen on getting her hair cut, but after it was done, I think she really enjoyed the pampering! :-)
Wednesday, December 26, 2001 at 02:24 PM (CST)
What a wonderful Christmas we had! It was so much fun to see Michaela so excited about Santa. Katie still doesn't quite understand the whole concept of Santa (she is 2 1/2) but she certainly understood that she got a bunch of new toys!
Santa got the girls a big wooden train set that has its own table. Michaela was so excited, she woke up before us, at around 6:30 am, and she ran into our bedroom waking us up. She said "Santa came! He really did! He really did! He's such a nice guy!" It was a priceless moment. We looked at some photos of Michaela from last Christmas. What a differance a year makes! We are so thankful that she is healthy now.
Thursday, December 13, 2001 at 10:46 AM (CST)
It has been such a long time since we put a new entry in, I figured it was long overdue. Not a lot of new news to report. Michaela is going to be an angel in her pre-school Christmas program. I better get started on that costume! The girls are getting excited about Christmas and Santa coming soon. Poo is doing great, she feels good and she looks great. She is enjoying both pre-school and dance class very much.
We wish everyone a great Christmas season and the best new year possible. For all of our freinds still going through treatment-- stay strong! It will all soon be over and you can move on!!
Wednesday, November 07, 2001 at 11:06 AM (CST)
Michaela had her MRI and chest CT without sedation on Monday!! She was quite the trooper. I was very impressed that she was able to remain still that long. We finally got the results, which are "no change" which is what we want to hear!!
We are able to visit the nurses up on the 5th floor at the hospital. All of our favorite people were there-- it was great seeing everyone again--- under differant circumstances. They were shocked when they saw Michaela, they haven't seen her since April and I must say she looks much better/healthier now. We also ran into friends we made while we were there who are still going through treatment-- say a little prayer for them if you find a chance!
Monday, October 22, 2001 at 11:11 AM (CDT)
Wow!! Michaela is 5 years old! Its seriously unreal to think she just turned 5. I know 5 is still a very small child, but she seems so grown up now-- it's kind of sad! She had two birthday parties, one on Saturday and one on Sunday. She had a great time at both and received lots of very nice gifts, she is very lucky.
She is going to be a fairy princess for halloween, and Katie is going to be "Po" from the Telletubbies. Soon after we go in for Michaela's next set of follow up scans.
Friday, October 19, 2001 at 02:11 PM (CDT)
Michaela turns five this Sunday. Amazing! She is getting so big, and she is so smart. Some of the things she says are just incredible. She went with me last Sunday when I got 11 inches cut off my hair. We sent it to "Locks of Love" an organization that provides cancer kids with free wigs of human hair. Its a really neat organization.
She didn't really understand what we were doing there at first. When I asked her if I should have my hair colored she said, "Ya! Lets color it Pink!" I said, um, no. I think now she finally understands that we are sharing it with other kids.
Monday, October 08, 2001 at 11:21 AM (CDT)
Michaela and her sister were flower girls last Friday for her cousin's wedding. She was so very excited and did great. She was very well behaved. Katie on the other hand was quite the little handful, she was definatly acting her age (2) !! :)
Michaela is enjoying preschool and dance class. We went to the pumpkin patch yesterday where the girls got to pick out their own pumpkins from the field. That was alot of fun.
Now we wait for Nov 5th for her next set of scans. She is doing great, feeling great, and looking great, so we don't anticipate anything negetive information on the 5th.
Wednesday, September 12, 2001 at 12:31 PM (CDT)
Michaela started pre school yesterday! She doesn't turn 5 till october so she starts kindergarten next year. She was SO very excited about pre school!! She was just the little chatter box about her first day all night last night.
We had an appointment on Monday and they say that she is growing steady. Last year, prior to the radiation, she was at the 50% mark for height and just below 50 for weight. Now a year later she is 2 inches taller and a few pounds heavier so she is still at 50 and just under 50. So, that means---- so far------ that the radiation seems to have no effect on her pituitary gland. This is what we expect from her having had proton beam radiation, but you just never know. For now they will continue to monitor her growth and her thyroid. We are all set untill November which is her next set of scans.
Tuesday, August 28, 2001 at 09:44 AM (CDT)
Nothing much new to report other than Michaela is feeling great. Her hair is about 3/4 of an inch long now, and she actually wakes up with "bed head" now! She and Katie share a room in the new house and the are practicing their sharing skills daily.........they are still working on it! Michaela loves her playhouse and it is finally landscaped and we laid our sod so it looks complete-- we will have to post new pics!
Thursday, August 02, 2001 at 11:55 AM (CDT)
I talked to Michaela's oncologist this morning-- he called back a couple hours later and told me that her scans are CLEAR!!!!!!! All three scans are clear!!!! The mass has stayed the same, which reinforces their thought that it is scar tissue.
Her sinusitis is still there, after 7 months, but has signifigantly decreased since May.
Now we are free and clear till November!!!! Yea!!
Monday, July 30, 2001 at 02:14 PM (CDT)
Michaela has scans again on Wednesday. Another chest CT, MRI, and bone scan. We are really nervous at the thought of more scans. It is nothing out of the ordinary, the scans are scheduled for every 3 months for the first 2 years. However, the idea that they could come back with bad results is just too much to take. I don't know about Andy but I actually just try to block it out completely, otherwise if I think about it too much, it actually makes me sick. She is acting totally normal, she looks great, she is eating great, her energy level is really high. Everything looks good going into this appointment on Wednesday. I will post again when we get the results.
Monday, July 16, 2001 at 08:15 AM (CDT)
Hi! Guess what--- NEW PICS! It has been a very long time since we updated Michaela's photo album, so check it out. The indoor pictures were taken in our new home while it was still being built.
Michaela is feeling really good lately. Her hair is getting pretty long-- it looks like she will be a little blondie again. She is taking some pretty strong antibiotics to combat a sinus infection that has been hanging on since Jan, so we will see how that goes. Other than that, she is just a happy, healthy little girl!
Thursday, July 05, 2001 at 08:31 AM (CDT)
Sunday we got to meet some internet freinds who are also fighting this battle. We met Jake, who is 7 and also has Rhabdo, his parents and his sister at Camp Snoopy. Michaela thought it was really neat to meet another little person going through he same thing. He is a real trooper and is doing great.
Michaela had surgery on Monday to have her port removed. She did well, although she was very groggy and in some pain. She is really happy to have it removed, though. She is walking around proudly showing anyone who wants to see, that it is in fact-- a thing of the past! She also got tubes put in her ears, and her sinus tapped. The tubes are because she is having fluid problems in her ear secondary to the radiation she recieved. The sinus tap was so they could culture it and figure out a way to combat a sinus infection that has been hanging on since Jan.
Friday, June 22, 2001 at 10:59 PM (CDT)
Michaela got her house today!!!!!!! Make A Wish and Custom Playhouses finally came through and delivered her playhouse!!!!! She has been waiting for that for 10 months-- and believe me, after seeing her reaction, it was WELL worth the wait! She was so incredibly excited. It looks like she and her sister will have years and years of fun in that house. You can scroll down to click on a link to take you to the playhouse page. Her playhouse is called the "Victorian Andra".
Thursday, June 14, 2001 at 09:48 AM (CDT)
We saw Dr. Rimmell on Tuesday. Oddly enough it is almost a year to the day after our original meeting. Anyways, it was decided that on July 2nd when she is to have her port removed and her sinus's tapped-- she will also have tubes put in her ears. Dr Rimmell said that in his experience, almost all kids who recieve radiation in the head/neck area end up having life long ear fluid problems. He is going to start with a temporary set of tubes which will last about a year. When those come out we will evaluate then and either she will have recovered on her own or she will have a permanent set implanted that will last her lifetime. Time will tell.
I have to update her pics! You should see the hair she has coming in!! We're gonna be stocking up on the hair "pretties" here real soon!!! :-)
Wednesday, June 06, 2001 at 02:47 PM (CDT)
Michaela is scheduled to have her port removed on July 2nd at 11 am. That will be an intense moment. I believe her port was put it either Julty 1st or 2nd last year. How ironic. She is still having ear problems, so they are thinking it is secondary to radiation. This is not unusual. Due to the amount of radiation in the area, it swells the ear canal and prevents it from draining. It will resolve itself over time or she will have tubes put in. Either way, no biggie in comparison to everything shes been through up to this point.
Her playhouse is ready to be delivered. Its only taken 11 months............ They want to deliver it now, but we are moving in about 6 weeks so, it will be delivered to the new house.
Wednesday, May 30, 2001 at 03:03 PM (CDT)
We are awaiting Michaela's ENT appointment to finalize a date to have her port removed. We were going to start her with swim lessons, however the doc's have advised against it. They are telling us that because of her reoccuring ear infections. Also, the ENT doc wants to "tap" her sinus's while her port is being removed, leaving her sinus's vulnerable to strong chemicals. Its too bad, she was really looking forward to it, but she starts pre-school and dance lessons in September, so it should be okay.
Thursday, May 24, 2001 at 11:11 AM (CDT)
Hello all. Michaela is still taking the Augmentan for her sinus infection. We are waiting a call back on when she will have the port-removal surgery. During the port removal the ENT doc is going to do a sinus tap just to be sure it is cleaned out. It is a same day surgery, which is really nice as non of us are anxious to spend another night in a hospital anytime soon. They are trying to schedule it for next week so Michaela will be nice and healed up before she begins her swimming lessons in June!
Wednesday, May 16, 2001 at 04:23 PM (CDT)
REMISSION!!!!!!!!!!!!!!!!!!!
Her scans came back clean!! They tell us she is considered CANCER FREE and in remission!!!!! How long we have been waiting to hear that news.
She has an appointment next Monday to discuss her port removal. After that we don't have to go back till August, when she is due to get scanned again!!
What are we gonna do with all our new found free time??? haha
She did get a sinus CT which was reviewed by Dr. Rimell, who put her on Augmentan for 2 weeks and a nasal spray for her sinus infection. No biggie, it should clear up quickly.
Monday, May 14, 2001 at 07:24 PM (CDT)
Well, what a busy day. She had an MRI, a chest CT, a sinus CT, and a bone scan. We were really thankful that they could get all the tests in one after the other on the same day.
Getting her IV in was a little challenging. The sedation nurse in MRI put in on the left side, and it wouldn't work, then she pulled it out and put it on the right side--- still didn't work. She told me they were likely blocked. I told her she was using the wrong size needle. She tried a longer one-- and guess what, it worked. Michaela was a real trooper through all that confusion.
Now, hopefully they will be able to tell me something in the next couple of days.
Tuesday, May 08, 2001 at 02:13 PM (CDT)
Hi All! Nothing much to report other than it seems her platelets count has recovered! She seems to be feeling great. She has a nasty cough, but we think thats attributed to the sinus infection.
Her scans are scheduled for May 14th. We are getting nervous, anxious, scared, excited--- you name it.
Monday, April 30, 2001 at 12:18 PM (CDT)
Well, I'm not quite sure how we did it, but it appears we managed to avoid the hospital during Michaela's neutropenia. Her white cells are back to 24.4, her hmg is 9.1 and her platelets are still climbing at 58. She seemed slightly feverish this weekend but, nothing a few freezes couldn't cure!
Now it seems we wait until her scans on May 14th. She will have a bone scan, a chest CT, a sinus CT, and an MRI. After those results come back, we will know exactly where we stand and what the plan of action will be.
We anticipate the scans coming back clear, then rescheduling for another set in 12 weeks. Her port may be removed as soon as June. She has an appointment with an ENT specialist so he can evaluate her sinus cavities. It seems she may be having some complications secondary to the radiation. Also, I am going to push for her to see an endocronologist so her hormone levals can be monitored. She shouldn't have any problems since she had Proton Beam radiation, but I'd still like it to be closely monitored.
Saturday, April 28, 2001 at 12:40 PM (CDT)
We had a little scare. After Michaela got her transfusion on Thursday, she started to get a headache. The headache got progressivly worse as the night went on. It got to the point where she was just holding her head crying. She has never had any type of reaction to receiving blood in the past, so this was really unexpected.
I called the Oncologist and she seemed concerned. Also, Michaela had fallen a couple days before and got a bump/bruise on her head. The Onc was worried that the bump may be bleeding internally because her platelet count was only 20. So we took her in and it was determined she needed a CT of the head.
It came back clear-- so that was a HUGE relief. It never occured to me that a bump could cause that big a problem-- but now it seems obvious considering how low her counts get. Shes has seemed borderline feverish the last few days but bounces back when we have her drink lots of fluid. Only a few more days and her counts should start recovering.
Wednesday, April 25, 2001 at 12:14 PM (CDT)
Counts were done today. Her white cells are down to 200, which isn't good-- but I'll take it as they have been lower than that. Her hmg is 7.9 and her platelets are at 20. She is going to get transfusions for both tomorrow. Hopefully this will be the last time she needs a transfusion.
Friday, April 20, 2001 at 08:43 AM (CDT)
SHE IS DONE!!!!!!!!! SHE IS DONE!!!!!!!!! I can't hardly beleive it, but she finished her last round of chemo on Wednesday. She tolerated it pretty well. She did get sick once on the way home, but once she threw up, she felt better. We went to Toys R Us on the way home and she was running around like a maniac.
They tell me that she will be declared officially in remission once the scans scheduled on May 14th are completed and come back clear.
She will have an MRI, a chest CT, and a bone scan. They also tell me that she can get her port removed as soon as June!!!! How exciting. Now, we just have to hold our breath and cross our fingers that she won't spike a fever during neutropenia this time. None of us want to go back to the hospital.....
Monday, April 16, 2001 at 02:55 PM (CDT)
Hi everyone. Michaela was scheduled for her final chemo today. However, its been delayed till Wed. That is fine. So, now the big day will be this wednesday. We can't believe its coming to an end. It seems so unreal.
We are waiting for the weather to cooperate to have Michaela's house delivered. The ground is too soft because of the melting snow and the rain that followed. We either need it to re-freeze (which may be possible after todays snow!) or dry up. Either way I hope its soon, I cant wait for her to get that house!
Monday, April 09, 2001 at 02:09 PM (CDT)
Michaela had her counts done again today. Her marrow has recovered and then some. Her white cells are up to 55.1, her hmg is 9.1 and her platelets are 82. Her absolute neutrofil count is 28,000. For her to recieve chemo the ANC needs to be 1,000 or higher. So, while we don't want to count our chickens before they hatch, we are pretty confident that she will be ready to receive chemo on Monday.
We are working with Make A Wish now to try to set up a time to have her playhouse delivered. If you haven't seen it, there is a link below to their website. They are called "Custom Playhouses". The house Michaela is getting is actually shown on their site. Its called the Victorian Andra. Its very cool--quite the little girls dream I think. Check it out!
Saturday, April 07, 2001 at 02:12 PM (CDT)
We are home! Yea!! So nice to come home. Michaela seems to be doing great. Her energy is back and she is having fun playing with her puppy and hampster. Her next and FINAL treatment is scheduled for April 16th! We are so excited.
Thursday, April 05, 2001 at 04:50 PM (CDT)
Michaela is still inpatient. The good news is that she hasn't has a fever since Tuesday night. She is spending most of her time in the playroom. :) They start a Vanco/Ceftaz combo of antibiotics when they come in for a fever and that lasts 48 hours. That 48 hours will be up tonight at 10 pm. So, they think since she seems to be feeling fine, that they will release her tomorrow morning.
Her white cells are up to 2000, her hmg is 9.1 and her platlets are at 13. So she will get a platelet transfusion tonight.
Wednesday, April 04, 2001 at 09:18 AM (CDT)
Michaela is back in the hospital. Last night she was running a fever of 102, so we had to bring her in. She did not want to go, she is tired of everything. The fever may be secondary to her ear infection. She has been on antibiotics since Sunday for that ear infection. The medication may not be strong enough though, resulting in this fever.
We will be in the hospital until at least Saturday, which is when the blood culture results will be ready. They wont release her until her blood counts recover to at least a 1000 absolute neutrophil count so that may take awhile.
Monday, April 02, 2001 at 11:01 AM (CDT)
Oh this poor kid has just had enough. She is completely fed up. She is acting out at every appointment we have now. She is actually getting mouthy with the doctors. She has had a sinus infection since January. For reasons I don't understand they have chosen not to treat it. She was up last night crying because she said her ear hurt. We saw a doc after her counts today and he confirmed an ear infection. Her white cell count is less than 100 (normal is at least 5000). Her hmg is okay at 8.9 and her platelets are really low at 45. So now we cross our fingers and hope to stay out of the hosiptal with Michaela's going through neutropenia.
Thursday, March 29, 2001 at 10:17 AM (CST)
MRI results are in!!!!! Her tumor has shrunk another 15%!!!!!! It is wonderful news!! 15% might not sound like much-- but it is amazing progress. The radiation oncologist back in Boston last fall told us that the radiation "solidifies" the tumor. It (hopefully) kills the tissue and it turns into scab/scar tissue. Then, in most cases-- but not all-- the body will sluff that dead tissue back into the body. Over time it may completely dissolve. Thats what Michaela's tumor appears to be doing. So, it has the potential of being completely gone in time.
She has one more treatment which is scheduled for April 16th. Once that is given, she will be in remission. She will have a follow up MRI on May 7th then every 12 weeks thereafter for 1 year, then every 4 months, every 6 months and finally once a year once she reaches the magic 5 year date. She will be considered "cured" when we reach the 5 year anniversary.
Tuesday, March 27, 2001 at 10:28 AM (CST)
13 rounds of chemo down, ONE to go!!!!!!!! Michaela's counts recovered incredibly well over the weekend. Her wbc on thursday were 1.4, her platelets were 138, and her anc was 588. On Monday, her anc was 5,100, her wbc were 6.3, and her platelets were 295! I don't think her platelets have been that good for a very long time.
She tolerated the chemo very well again. Seems that ativan and decadran really do the trick for her. An MRI and chest CT were done yesterday as well. The chest CT came back clear, and we are still waiting on the results of the MRI.
Friday, March 23, 2001 at 10:24 AM (CST)
Counts were done again yesterday. Her white cells have dropped to 1.4, her hmg is down also, to 8.1, but her platelets have jumped to 138. They are thinking she will need more blood on Monday. Her ANC is only 588 and needs to be at least 1000 to receive her next round of chemo. So, it is questionable if her body will be ready on Monday. We are hoping it will be because we really want to stay on schedule.
She seems to be feeling fine. She as fiesty as ever. She and Katie plays with the puppy and the hamsters every night. We are working on teaching Katie to be gentle with the hamsters.... :)
Sunday, March 18, 2001 at 01:55 PM (CST)
We are home. Michaela is doing fine. She has been doing just fine since Wed, so we aren't really sure why they made us stay so long. It always makes you wonder if there is something they aren't telling you. When she was originally dx, they told us things in stages, so now I am slightly leery.
Michaela wanted a hamster when we left the hospital. Whenever she stays in the hospital she gets to pick a prize on the way home. Usually we stop at Toys R Us, but this time she wanted a hamster. So, now we have a new member of the family. A light brown teddy bear hamster named "fuzzy bear". Pretty soon Andy will have to build an arc! haha! :)
Thursday, March 15, 2001 at 10:42 AM (CST)
It has been 3 days and we are still inpatient. It seems as though Michaela won't be released until at least Saturday. She has beeen feverish on and off the past three days. Her absolute neutrophil count is also below 500, which is very low. Therefor, they want to keep her for observation.
She appears to be fine. She has a really ugly cough, but no other outward signs of illness. She has had several visitors the past few days. That has been really neat, its made her happy.
Monday, March 12, 2001 at 09:15 PM (CST)
We are back inpatient. Michaela spiked a fever of 103 early Monday morning. She is complaining of pain in her ear and says her tummy hurts. They started her on antibiotics and now we wait. She will be inpatient for 72 hours to see if any bacteria grows in her blood cultures. If it is clear, and her counts seem okay, we will come home. Otherwise, they have to find out what is causing the fever.
It is obvious that she is really getting sick and tired of being put through all of this. Her spirits are getting beaten. She simply doesn't feel good and is sick of it. Only 5 more weeks of treatment.
Wednesday, March 07, 2001 at 11:31 AM (CST)
Her test for RSV came back negative. So, chemo was given at around noon on Tuesday. She tolerated it very well again. This treatment was just like the last treatment. She wasn't sick at all. She was a little tired but that was it. She took a little nap, then she was up and ready to go play in the playroom!
She was released from the hospital Wed morning and is home now with Dad. She has 4 more doses of chemo spread out over the next 6 weeks. Two rounds of the VAC and two weeks of just the vincristine. It coming to an end! Yea!!! :)
Monday, March 05, 2001 at 10:21 PM (CST)
Michaela is in the hospital awaiting her 12th round of treatment. Her counts recovered well over the weekend. Her wbc are 4.5, her hmg is 8.2, platelets are 137 and her ANC is 2200. So thats a great improvement-- except for the hmg, but that was expected. She hasn't gotten her chemo yet because they are testing her for RSV. RSV is a respitory virus. Kaitlin had it about 10 days ago, so they are testing Michaela for it. They did a throat culture tonight and said that they will have the results tomorrow. The Onc said they can't give chemo if she has this virus. Hopefully she doesn't have it. Chemo is no fun-- there is no doubt about that-- however, there are only 6 more weeks to go, and we don't want any delays. So again we wait.
Tuesday, February 27, 2001 at 08:34 AM (CST)
It is so wonderful to think that there are only seven more weeks of chemotherapy. Michaela's poor little body is really starting to show the effects of long term large chemo doses. Her counts were done again. Her white cells are at 8.7, her hmg is 9.6, and her platelets are at 87. Even after a transfusion last friday her platelets are only at 87. Normal is 150-400. They have to be at least 100 to receive her next round of chemo. I was concerned about how the platelets don't seem to be recovering as well as they used to so I spoke to one of the oncology nurses at the U. She told me that it is normal for this stage of treatment that her counts don't recover as quickly as they used to. She is starting to look so frail. It is hard to watch, but we have to remind ourselves what the end result will be-- and thats only 7 more weeks away.
Thursday, February 22, 2001 at 01:42 PM (CST)
Wow, her counts have really dropped. Her cbc was done again today, and it showed her wbc at .2, her hmg is 7.4, and her platelets are at 7. So, needless to say, she is getting a transfusion of platelets later this afternoon and she will be getting a hmg transfusion tomorrow.
She also saw a dentist today because she has been complaining of front tooth pain. The dentist we saw wasn't quite sure how to handle it, so she referred us to another dentist, who we will see March 7th. Her initial thought was that the pain may be caused by the radiation treatments, however, since she had the proton beam radiation that shouldn't be happening. So we wait and see.
Monday, February 19, 2001 at 09:39 PM (CST)
Hello everyone. Michaela had her blood counts done again today. Her white cells are .4, her hmg is 9.3, her platelets are 30, and her ANC is .3. Looks like the only thing looking good is her hmg. Her platelets sure took a beating. A week ago they were at 141. If they don't improve by Friday she will have to have another platelet transfusion. If she does end up getting a transfusion that will make her 3rd for platelets so far. I think her hmg is going strong because she received a red blood cell transfusion during the last inpatient stay.
Boy, will it be nice when this is a distant memory. If you haven't already seen it, check out the last picture in the photo album, its a pic of Michaela and her new puppy!
Tuesday, February 13, 2001 at 08:56 PM (CST)
All I can say is wow, and thank God. This round of chemo went exceptionally well. She had virtually no side effects. No sickness, no moodiness, no exhaustion, nothing. Its just incredible. If chemo could be like this every time, it would be a breeze-- haha.
I'm not letting my guard down just yet, I can't imagine we'll get off this easy. She is doing great though and we got back home this afternoon.
Also-- don't forget to sign her guestbook!!
Monday, February 12, 2001 at 08:26 PM (CST)
We are back inpatient for Michaela's 11th round of chemotherapy. After this there are three more treatments. Seems a little unreal. Last round she was very, very sick so we are praying that the anti nausea meds do their trick this time.
Her counts weren't great but weren't too bad either. Her wbc are 2.1, her hmg is 8.3, her platelets are 141, and her ANC is 1.6. They are going to go ahead and give her a transfusion as her hmg has been steadily decreasing since the last transfusion. If anything, its convientient to have it all done at the same time. Hopefully if all goes well we will be home tomorrow.
Tuesday, February 06, 2001 at 09:19 AM (CST)
Counts were done again yesterday. They are looking much better. Her white cells are at 41.4! Now, the normal range is 5-17, and in a normal, healthy person a reading of 41 would be a sign of possible infection. However, in cancer patients who are given nuepogen shots daily, this can happen and isn't cause for concern. We just stop the heupogen shots-- which is great for both of us!!
Her hmg is 8.7 and her platelets are 171. Thats a great improvement from the state her platelets were in last Thursday (they were at 16). She is feeling great so we are looking forward to an uneventful week!!
Friday, February 02, 2001 at 10:01 AM (CST)
It seems were rounding the corner on the low counts and its starting to look like we're gonna dodge the hospital till the 12th! Michaela's 11th round of chemo is scheduled for the 12-13 of Feb. Her counts were done again yesterday. Her white cells are at 900, her ANC is .3 (they like it to be at least 1.0), her hmg is 9 and her platelets are at 16. So, today we are going to the oncology clinic to get some platelets transfused. This will be only the 2nd time shes gotten platelets. She seems to get red cells quite often, but not platelets.
So, we're crossing our fingers for an uneventful weekend!
Tuesday, January 30, 2001 at 10:24 AM (CST)
We're home! Michaela seems to be doing much better. She is eating much better-- which is very nice, she lost 2 pounds over the last 2 weeks. Her counts aren't great, but they aren't real, real bad either. Her white cells are at 400, her hmg is 10.7, and platelts are at 39.
We have a new addition to the family. Michaela and Katie got their first dog. A little 10 week old Shih Tzu Michaela named Aerial, after the charecter on Little Mermaid. She is really excited about our new addition!
Friday, January 26, 2001 at 04:27 PM (CST)
Still in the hospital. She received some blood yesterday as her hmg was down to 7.9. They think the original fever was due to her being dehydrated and just an overall effect from her treatment. The Oncologist warned us that the last few treatments would be very hard on her physically. At first they were attacking a healthy immune system, now every treatment just beats up on a weak immune system.
They tell us we will be in the hospital till at least Sunday to rule out the possibility of a bacterial infection. They take blood when you are admitted, then they watch it for 72 hours to see if anything grows in it. If not, you get released providing everything else seems okay. As of yet she has not had a bacterial infection-- Thank God.
Thursday, January 25, 2001 at 08:28 AM (CST)
Michaela was released from the hospital on Tuesday at 4 pm. Yesterday she seemed very unlike herself. She was lethargic, her eyes seemed rather sunk in and she started to run a fever. We anticipated she wouldn't feel well the day after chemo but, this was more than usual. So, we called the Onc last night and were told to bring her back to the hospital. Here we are, back inpatient till Sunday or so. Hopefully this will turn out to be chemo related rather than some type of infection.
Tuesday, January 23, 2001 at 07:55 AM (CST)
Things are not going so smoothly. We are currently in the hospital for Michaela's 10th round of chemo. She hasn't had any nausea the last two rounds so we thought we had the problem licked. Well, we didn't. She has thrown up 5 times since 1 am this morning. Thats a pretty hard sight to see. Hopefully things will get better and we will still be able to go home today.
Friday, January 19, 2001 at 10:52 AM (CST)
Counts were done again on Thurdsday. Not the greatest, but could be alot worse. Her wbc count is at 2.5, hmg 10.2, platelets at 208, and Nuets % at 65. I got spoiled with her having white cells of 9.8! :-)
Monday we go in for her 10th treatment. One more treatment this month, 1 in Feb, 2 in March, and 1 in April-- then were done!!! We are so excited........but trying not to get to ahead of ourselves.
Finally!!! New photos!!!! Check them out.
Monday, January 15, 2001 at 09:30 PM (CST)
This weekend was pretty fun. Michaela's counts are actually "normal"! Her wbc are 9.8! Her hmg is 10.2 and platelets are 142. I don't think her white cells have been in the normal range for over 4 days since she started treatment. So, to celebrate we took her and Katie to one of her favorite places....... McDonalds playland.
We haven't been to one since her diagnosis, since they are so germy. However, today with her counts looking so good, and with her continuing on that oral antibiotic for another 3 days, it seemed okay. She was really excited. It was cut to watch her and Katie tear the place up!
Hopefully today I will get some new pictures in the photo album. I have a cute pic of the girls from Christmas and some other cute ones from Boston. The current pics are sort of out dated, so hopefully we'll get them replaced today!
PS.... Michaela says get rid of Denny, too!
Friday, January 12, 2001 at 09:56 AM (CST)
We are being sprung! Hopefully today Michaela will be released from the hospital. They found that she had an ear infection, a virul pnemonia (sp?), and mouth sores which may or may not be related to the virus. They could be a side effect of chemo.
Her counts have come up greatly. Her white cells are 5.8 (big change from the .0 on Monday!!), hmg is 10.2 (thanks to her blood transfusion), and her platelet count is on the rise at 42.
She is gonna be sent home on an oral antibiotic to make sure she is ready for her next round of chemo which is Jan 22nd. Slowly but surely we're getting closer to that majical date of April 16th.
Tuesday, January 09, 2001 at 10:28 AM (CST)
We are back in the hospital. Yesterday when I picked Michaela up after work, she was complaining of an ear ache. I took her temp then and it was 99.0. I called the on call Onc and he said to wait it out and see if the fever got higher.
When we were about to go to sleep for the night, she was feeling pretty warm so, another check of her temp showed a fever of 101. We got here last night around 11 o'clock. It looks like she has an ear infection, some mouth sores, and possible pnemonia (sp?). They did a chest X-ray last night and it showed possible problems in her left lung, so they did another chest X-ray today to get a better view.
So, here we are, we will be here till at least Thursday.
Monday, January 08, 2001 at 07:53 AM (CST)
25 weeks down, 17 to go!! Michaela had a very good weekend. She had lots of fun playing at Grandma and Granpa's house, and playing with her cousins Emily and Sarah on Saturday while the adults watched the Vikings beat the Saints!!
We were told her last round of chemo will be the 39th week, followed by an MRI/CT Scan on the 42nd week. Then, subsequent MRI/CT Scans every 3 months. We are pretty excited, we thought treatment ended in May, now, it looks like April 16th, providing all goes well. I never thought this would become routine, but it has. The thought of her being checked only once every three months is actually a little scarey.
Wednesday, January 03, 2001 at 10:28 PM (CST)
Week 24 of 42. This treatment went very well. Michaela was not nauseated at all. The decadron really did it's job. Also, her personality wasn't altered either-- which was really nice. Decadron is a steroid that can cause mood swings, and last time around she had some pretty wicked response's to that medication. Overall she felt great, and was in a really good mood-- what else can you ask for? Hopefully we can avoid going back inpatient for fevers this time around.
We found out today that Michaela's Grandpa Vern passed away. Vern is Andy's step-dad, whom Andy grew up with. Michaela really liked her Grandpa Vern-- and she was one of his favorites too. He will be greatly missed.
Friday, December 29, 2000 at 04:42 PM (CST)
Counts were done again yesterday. They still look pretty good. Wbc count of 6.2, platelets 172, and hmg 11.5. Couldn't really ask for much more. She is on her antibiotics till Dec 31st. Katie bug is sick so Michaela is going to spend some time over at her cousins house. Round number 10 is going to be on Jan 2nd. 9 rounds of cehmo down, 5 to go! Yea!!!!!
She really enjoys going to the hospital, so that is really nice. She likes all the toys, their chicken noodle soup, and being "waited on". What a kid.
Happy New Year to all.
Tuesday, December 26, 2000 at 11:30 AM (CST)
Merry Christmas everyone. Michaela had a blast on Christmas day and eve. We celebrated with friends on the 22nd and with family on the 24th and 25th. Santa was good to Michaela and brought her the Barbie Cash Register she's been wishing for since October! It was an exciting Christmas this year. Michaela finally understood the concept of Santa and was really excited about it. Katie finally understands the concept of presents and really likes getting them too!
Poo had her counts done today, and they are looking good. Her wbc count is 24, so no more neupogen. Her hmg is 11.1 and her platelets are at 200. That is a great improvement from this time last week. She is now looking forward to spending the weekend with her favorite----- Johnny!
Saturday, December 23, 2000 at 06:19 PM (CST)
WE'RE HOME!!!!!!!!! Yea!!!!!!!! We got home late Friday-- we are sooooo happy to be home for the holidays!!! Turned out to be a sinus infection and we're home accompanied by some clyndomycin. Merry Christmas everyone!!!!!!!
Thursday, December 21, 2000 at 10:28 AM (CST)
Well, we are back in the hospital. Andy brought Michaela in on Tues night around 5 pm, and I joined them after work. On Monday her counts showed basically no white cells and on Tues she got a fever of 102.6. So, here we are. Yesterday they did the MRI and chest CT. They were scheduled for Jan 3rd but they decided to go ahead and do them since we were here.
The preliminary results showed that the chest CT was negetive. Rhabdo patients tend to spread to their lungs very quickly so a chest CT is always done as a precautionary measure. The MRI showed that the tumor is exactly the same as before, which is what they expected. The radiation that she received basically solidifys the tumor, it doesn't melt it away. It basically turns into a scar and stays the same size/shape until the body sluffs it back into itself. So, they always expect it to be the same or a little smaller. Anything but bigger is acceptable.
Michaela is now on several differant antibiotics. The MRI showed a sinusitis, which is very likely the cause for her fevers. We will likely be sent home on antibiotics, but we won't get to go home untill her wbc count recovers. We're shooting for Friday or Saturday.
Monday, December 18, 2000 at 04:12 PM (CST)
Counts were done today. Her WBC count is very, very low. Less than 100. Normal is at least 5000. Her HMG is pretty high-- its at 10, which is a nice change. She was averaging around 7.5-8.0 when we were in Boston. They gave her blood during the night during the last round of chemo, and that has apparently helped quite a bit.
The medication they used for her nausea was decodran. The problem is that its a steroid, and while it kept her nausea down, it bad her incredibly irritable. Some kids can get very cranky and have mood swings while on that, and it seems Michaela is one of them. It only seemed to last 2-3 days, so it seems like a good trade off.
So, we will keep our fingers crossed and hope we get through the next few days with no fevers. Her Onc increased her dosage of GCSF, so I'm hoping it bounces back pretty quickly.
Wednesday, December 13, 2000 at 09:51 AM (CST)
What a busy past few days Michaela has had. She had her 8th round of chemo on Monday. It went very, very well. She didn't get sick once! I think the doc's have finally figured out the formula necessary to keep her nausea down. She gets a Zolfran drip with decodran (sp?) every 4 hours. It did the trick, and this was the "best" chemo experience yet. It is a big accomplishment to remain nausea free.
She had a visit from a local TV anchorman-- actually a sportscaster. He visted the kids and brought them gifts. He is a cancer survivor as well and now gives back to those going trough it. I thought that was kinda cool. Michaela didn't have a clue who the guy was, but I thought it was neat for him to come to the hospital and bring the kids gifts.
Michaela also had her hearing tested. Lately her hearing seems to be going a little bit. Hearing loss is a common side effect of chemotherapy. Sometimes she talks really loud without realizing it, or she just keeps asking you to repeat yourself. The hearing test showed that she is just below normal in the low frequency hearing and the high frequency hearing. The Onc told us that this is often temporary and in a very small percentage the hearing does not return to normal. We will continue to get it tested. A hearing aide for her life? Its a no brainer trade off.
Thursday, December 07, 2000 at 09:35 AM (CST)
HOME AT LAST!!!!!!! How great it is to have everyone home. Michaela is doing great. Her energy leval is really high and her spirits are up as well. They told us that after 7-10 days it may catch up with her and wipe her out for a week or two.
We have heard that before, and Michaela has always surprised them with her ability to rebound from treatment, so, while we're watching for her to slow down-- we don't expect it. She is due to go back to the hospital on Dec 11th for her 8th round of chemo. She is actually due on the 8th, but we thought that it would be nice for her to get the weekend off.
She is excited to go see Santa again with Kate and have their picture taken. Maybe this year will be tear free-- haha :-)
Friday, December 01, 2000 at 08:51 AM (CST)
Good news! Michaela appears to be responding so well to the radiation that they have cut her dosage back to the original amount! Now Andy and Poo will be home Tuesday afternoon. We are excited to have everyone back home and back to "normal".
Michaela is due for chemo again on the 8th of Dec, which is a Friday. Instead, we've talked to the staff at the U of M and have come to the decision that we are going to wait untill the 11th of Dec, the following Monday, to give her a little break. We all think she deserves it!
Last Sunday we spent the evening with the family who is ultimatly responsible for Michaela getting the Proton beam therapy. I met a lady named Karen online who's son, who was 3 1/2 at the time, had the exact diagnosis as Michaela (we had the same doc at MGH who told us their tumors are scaringly similar). She told me about Proton beam therapy and the benefits of that vs. traditional radiation, which are profound differances. Needless to say, we are grateful for meeting her. Her son is now 5 and has been in remission for a year. He's my little hero! It was great to meet them and see the light at the end of the tunnel.
Tuesday, November 28, 2000 at 02:09 PM (CST)
24 1/2 treatments down, 5 1/2 to go!!!!!!!! I am not in Boston with Andy and Michaela anymore. :-( Kaitlin and I flew home late Monday night. It had gotten to the point where it was very dificult to stay there with Katie, and we couldn't afford to pay for a differant place to stay. We felt like there was no option other than to bring her home. The place they are staying, the Hope Lodge, is great for adult patients undergoing treatment. It is just not a place suited for children. It is a beautiful facility that can't handle the dispruption caused by young children. They actually asked me to keep her "contained". Thats a tough task when dealing with an 18 month old. It is supposed to be a home away from home, but it only works that way for a select few. I think they have lost touch with the fact that their mission is to help FAMILIES in crisis. Sadly, they made it an impossible situation. So here we are, seperated, but only for one week.
I keep trying to tell myself that it will be a neat bonding experience for Michaela and her daddy. I have been home for less than 24 hours and have already talked to her 3 times! She is doing pretty well. Andy says she seems to be developing some kind of virul infection, so he'll have to keep a really close eye on that. Her counts aren't that great. Her wbc are 2.8, hmg is 7.7, and plt are 192. Usually, here in MN, they tranfuse if her hmg is under 8.0, but they don't out there. That has us a little concerned. Other than that, she is great. Her daddy took her to her very first movie last Sunday, "Rugrats in Paris!" She thought it was pretty cool. Tonight they are going to go see "The Grinch". One more week and they will be home, too!
Saturday, November 25, 2000 at 07:28 PM (CST)
Hello all. Starting tomorrow we can start saying that we are coming home "next week"-- that will be nice. It seems a little hard to believe that we've been here for 5 weeks already. Having Katie here sure seems to help pass the time, she is always on the move!
Michaela had her counts done again yesterday but we were unable to get the results. Her white cells are low I'm sure. Over this weekend they should recover pretty well. Last time she went from a wbc of .20 to 29.0 in 2 days! That neupogen is pretty good stuff!! She hasn't been feverish either, so we've managed to avoid the hospital during neutropenia again. Thats pretty amazing considering most people I've talked to have ended up in the hospital inbetween treatments at least 50% of the time. We've only been back once, although she has had to have blood products about 1/2 the time.
She is still taking her shots like a very big girl. She seems really interested in watching everything that is done to her. When the doc accesses her port, she watches very closely. They usually let her help push the heprin or something like that. She doesn't get scared, she is just really curious about it. Hey, maybe she'll be a doc someday and take care of her parents?? haha :-)
Tuesday, November 21, 2000 at 04:17 PM (CST)
Well, 20 radiation treatments down, 10 to go!!!! We are 2/3 of the way there, and pretty excited about it. Michaela had her 7th round of chemo last Friday. So much for Actinomycin being the drug that causes the most nausea.....
She was pretty sick the next day. It is so hard to watch her go through that. She is responding very well to the chemo, actually better than most. So, we realize its the best thing and that its saving her life, but it is still SO hard.
She went to bed Saturday night very sick and woke up Sunday morning a brand new kid! She bounces back really fast. She is getting very good about taking her medicine. She doesn't cry anymore about getting her shots. Its amazing, she just lifts her sleeve up and lets us give her the shot without making a peep. They said she'd get used to it, but I didn't believe them.....
Her eyelashes are growing back now too. I'm not really sure why as obviously she is still on the meds, but they are. I'm happy for that, I think one of the toughest things was when her eyebrows/eyelashes came out, she looked so differant. I know its only hair and is no big deal; but it is a constant reminder and sometimes, when your not ready for it, that can hit you like a ton of bricks.
Friday, November 17, 2000 at 09:41 PM (CST)
Hi everyone. Sorry for the delay in updating her journal! This week has been very busy having Grandma and Grandpa Z here and of course little Katie-boop. Thats just the way we like it too. The faster time flies the better.
She had another checkup from Dr Tarbell (her radiation oncologist), who said everything looks great. She said that sinus irritation/mucasitus would be expected about now, since the radiation is concentrated in the nasopharnyx, but, so far so good---no problems!!!!!!!!!
Michaela is in the hospital tonight for her 7th round of chemotherapy. Also starting next week she starts the weekly vincristine. She took a break between weeks 12-18, and now she starts again. She will have another break from it around week 24 I believe, I'd have to check her schedule. She has no outward side effects from the Vincristine so it really makes no differance. They tell me the body can't handle it for more than 12 weeks at a time before it needs a break.
Also during radiation they eliminate the Actinomycin from her regiment. This is think is very cool because it is thought to be the one drug that makes them the most nauseated. Anything that will help to keep her from throwing up-- I'm all for it. :-)
Thanks all. Take care.
Monday, November 13, 2000 at 08:52 PM (CST)
Hi all! We feel complete again having Kaitlin here with us. It was wonderful to get to hold/hug her again. A month felt like a lifetime.
We were told today that Michaela's treatment is going to be extended by 2 days. It is fairly typical that the dosage gets changed during the coarse of treatment, so we weren't that surprised. What the doc does is "prescribe" a certain dosage of radiation, and since she can only receive so much at one time, it is given over a period of however many days it takes. Also, the way her rounds of chemo are falling, we will likely be in the hospital at home on the Friday after we get home, due to her being in need of another treatment.
Chemo rounds were always on Wed, but the last time she got treatment her counts were too low so we were told to wait till her counts came up. She was thrilled to see Grandpa and Grandma and was so happy to see Kate, she was hugging and kissing all over her! Too cute.
Sunday, November 12, 2000 at 08:19 PM (CST)
Tomorrow is the day we have been waiting for! We will finally get our hands on Katie-Bear! Grandma and Grandpa Z are coming with Kaitlin and we are highly excited. Obviously Andy and I miss her like crazy, but I think Michaela really misses her, too. We have had 13 of 28 treatments so far. We have only 3 weeks to go. Michaela is tolerating her treatments very well. Its amazing. The adults that are being treated are nauseated, wiped out, pretty much feel awful. Michaela walks in, goes to sleep, and wakes up with a smile on her face, eats a lunchable and is off and running. You would never know whe is receiving radiation. Thank God for that.
Tuesday, November 07, 2000 at 08:19 PM (CST)
Election day. We did vote via absentee ballot, so we were good Americans! :-) Michaela had treatment number 10 today, and as usual she is doing great! We feel SO lucky that she hasn't (knock on wood) had any adverse side effects. Things are starting to run pretty smoothly so, its becoming a weird normal for us.
Michaela had her counts done last Friday and they were pretty low. (This is for you guys Linda and the gang!) Her Hmg was 7.6, WBC was .4, and Plt was 77. On Monday her Hmg was 8.6, WBC was 29.0, and Plt was up to 208! So, she doesn't need a transfusion this time!! (Can you believe it Wyoming Onc clinic ladies????) She has had a transfusion the last 4 treatments in a row, so this is a step in the right direction!
I forgot to report on our halloween. Michaela was the "naughty" witch (as she likes to say) from Wizard of Oz. She had a great time. It was chilly and damp but I put thermals and a sweatsuit under her costume. She wore a cute felt hat that had green and black yarn/hair hanging from it, a black dress, a broom, and her face was painted green. She wasn't to sure at the first couple of houses, but after the first few people started to give her candy, she figured it out real quick! She was sprinting from house to house yelling "Come on Mom, Come on Dad! This one! This One!" It was pretty cute. She got an ice cream bucket of candy...just what she needs..... :-)
Monday, November 06, 2000 at 07:30 AM (CST)
Hello everyone!
Only 4 more weeks and 20 treatments to go! Time is starting to go by, so for that we are happy! As I am sure many of you know, Michaela has to be under anesthesia for every treatment. Apparently the staff lost three of its doctors in September which has caused scheduling problems.
The facility we are staying at provides free transportation, however......sometimes Michaelas treatment is 4-5 hours before or after everyones elses. This of course, causes stress on everyone else, which is not good. All the guests that are being treated here at Hope Lodge have brain tumors. Life should be as stress free as possible for them.
The director here said we should go back to Boston to be closer to the hospital or rent a car so we could take care of tranportation ourselves. Well, going back to the Ronald McDonald house seemed like a very bad idea. The Hope Lodge arranged for us to rent a car for the month, at 50% less than the normal rate. It has worked out great. We actually get to feel like a normal family! We get to go places whenever we feel like it, to go rent a movie, or go shopping, or whatever. Its like being liberated at 16 with your license all over again!
We spent Sunday in Maine doing some sight seeing. It is beautiful there. We drove to the northern coast to a national park. Pretty impressive.
Michaela is doing great. She is tolerating her treatments very well, we couldn't ask for much more at this point. Grandma and Granpa Z are coming out next Monday with Kaitlin so Michaela will be able to get her "Grandpa fix" and I'm sure that will make her feel 100% better! We are SO very excited to see Katie, we miss her like crazy. Take care all.
Wednesday, November 01, 2000 at 03:06 PM (CST)
Well, the days are going by quickly. Not as fast as we'd like, but quickly all the same. Michaela has had 6 rounds of radiation and is so far (knock on wood) tolerating it very well.
She had her 6th round of chemotherapy last Friday and handled it very well. She was only sick the night we were in the hospital and was fine after that. She is not getting her weekly vincristine and is not getting her actinomycin during radiation so I think that helps quite a bit in making her feel better. At this point, we'll take it!
Another little girl started proton beam therapy today. They only treat 2 kids every 6 weeks. This little girl is 3 years old and her name is Dakota. She looks just like Michaela. I think its great that they are going through treatment together. They will be treated around the same time every day so they will get to know each other pretty well.
Saturday, October 28, 2000 at 07:31 PM (CDT)
Hi everyone. The last few days have been busy. Michaela has received 3 rounds of radiation so far, 25 to go. She is under anestetic, so she is completely unaware of whats going on. We go to the clinc, she takes a nap, and we go home. Its nice how that works out.
We moved from the Ronald McDonald house. We are now staying in Worcester about an hour from Boston. This home is called the Hope Lodge and is run by the American Cancer Society. It is an absolutely beautiful house. It was built for a family as their mansion and after being passed through that families generations, it was turned into a historical landmark, later to be purchased by the American Cancer Society.
It is much, much better than where we were. Michaela was admitted yesterday for her 6th round of chemotherapy. She tolerated it very well and is going nuts in the playroom as I type this. Getting the medication here was a little hiary but after a lot of argueing and asking for peoples supervisors...... :-).....they agreed to accept out of state insurance, otherwise her neupogen is just over 2000.00---- pretty scarey. I'm going to go let Michaela beat me in Candyland, take care everyone.
Wednesday, October 25, 2000 at 06:18 PM (CDT)
Hi all. First day of radiation down, 27 to go. The facility was built in 1949 so it doesn't have a very state of the art appearance. We found out there are 9 proton beam centers in the world, two of which are here in the US. Also, they only treat 2 kids every 6 weeks. The first day went fairly smoothly. The device they use to administer the radiation is scarey looking. It looks like an electric chair. The kids are in a sitting position which suprised me, I assumed they would lay down.
They put a mask on their head that looks almost like a fencing mask but its perfectly formed to their face. As a matter of fact, when it is over, they have "waffle face" from the little markings that are left over.
We are supposed to go into the hospital overnight tomorrow for chemotherapy treatment. However, the insurance company is giving the people here the run around so it may be delayed a couple of days. Nice, huh? :-( Also, since Mass General is an "out of network" facility, our percentage to pay will increase quite a bit. Thank God for those benefits!!!!!!! We will keep you posted on what happens the next few days.
Tuesday, October 24, 2000 at 01:59 PM (CDT)
Wow. What a weekend we had. We had an appointment last Friday and weren't scheduled for another one until today. Michaelas counts were really good and she was feeling great, so we decided to do some sight seeing.
Saturday we went to Salem. Its just 16 miles north of Boston. It was very interesting. I think much more for us than for McPoo, but she was very patient with us!
Sunday morning we rented a car for the first time since we've been here. We drove to New York City. It is 200 miles southwest of here, so we took advantage of its close proximity.
We took a wrong turn off the expressway and ended up in a not so nice part of 'da Bronx........for those who have seen "Vacation" with Chevy Chase... you can imagine our situation. It was pretty comical-- if not a little scarey.
We got outta there and headed to Manhatten. We found a Best Western and stopped there. After we dropped our luggage off we thought it would be neat to walk around a bit. Well, we started walking and about 6 blocks later we wandered into Times Square. It was beautiful. The next day we stood outside the Today show, went to the Empire state bldg, and the Statue of Liberty.
It was alot of fun-- which is awesome because life has really, really sucked lately. I don't forsee it getting any better in the near future. We start radiation tomorrow and another round of chemo on Thursday. Now its time to start counting days.
Friday, October 20, 2000 at 03:53 PM (CDT)
Well......... get ready for some GOOD news!!!!!!!!!!!! We fianlly heard how much Michaela's tumor has shrunk----- its shrunk by almost 50%!!!!! Isn't that wonderful??? We are getting that kind of a response already and we haven't even reached the half way point!! We talked in depth today to the radiologists and got information on all the possible side effects that could occur from proton beam radiation. It looks very promising. We were even happier that we came here after talking to Dr Tarbell ourselves.
After our appointment we went to the science museum. Michaela had a blast, We start radiation next Tuesday. The radiation actually takes place on the Harvard campus. Tomorrow is Michaela's 4th birthday-- yea!! We had her birthday party back home early, so she is convinced shes 4 "right now!"-- as she likes to say--- but we want to do something special for her.
Take care all.
Tuesday, October 17, 2000 at 04:45 PM (CDT)
Well, half a week down, 6 1/2 to go!!!! We are getting pretty familiar with the hospital. I am sure we'll be pro's at it by the time we head home.
Michaela is doing well, her counts were done yesterday and look pretty good. WBC are 45, HmG is 10.7, platelets are 200 and her ANC is 41%. Pretty good-- her wbc is a little high but they tell us that is due to the GCSF shots.
She has made a friend here at the Ronald McDonald house. Her name is Brianna. She is 2 days younger than Michaela, and quite the pretty little girl! She is being treated here in Boston as well.
The next 4 days will be spent "mapping out" her facial area for the beams. We have the time all to ourselves. A social worker at the hospital gave us tickets to the Barnum and Baily Circus for tomorrow night. We're really excited!! We think Michaela will have a blast there. Take care everyone, we sure are missing home!
Sunday, October 15, 2000 at 04:36 PM (CDT)
We're in Boston. We arrived at about 9:30 pm last night. Its a pretty nice house, but its lacking in privacy. Everything is basically a common area so, you get used to having all kinds of people around real fast. We explored the train system in the city and managed to get around pretty well-- and never got lost once! :-)
We're really hoping the next 7 weeks go by very, very quickly. We miss Katie, and everyone else.
Friday, October 13, 2000 at 04:16 PM (CDT)
Wow! What an amazing time we had last night at Michaela's benefit!!!!!!!! The music was amazing------- check out The Power of 10 whenever you can-- they are awesome. There were so many people there we ran out of space to sit down!
Its amazing, overwhelming, humbling, even a little embarassing to have that done for you. We can't begin to say thank you enough-- or who to even begin to say thank you to. The benefit was put together by the cities we work for, so they should take all the credit.
We leave tomorrow! Michaela is very excited to get on a big plane! We found out today that we can stay at the Ronald McDonald house in Boston, so we are really happy about that. Our 1st appointment is Monday morning, so we are getting anxious!
Thursday, October 12, 2000 at 09:54 AM (CDT)
Michaela is so spoiled!! :-) She is the only pediatric oncology patient at Fairview Lakes hospital in Wyoming and the staff spoils her rotten!! Today they had a little birthday party for her with present, cupcakes, and balloons. It was really sweet. We are sure gonna miss them while we're in Boston.
We got her blood counts today and now we know for sure that she won't be coming to the benefit tonight. Her white cells are .27, normal is 5.0-17.0. Also her platelets and hemoglobin are very low so she needs to get both platelets and a blood transfusion tomorrow.
We think Grandpa Z might take her in to get that done, so he can spend some time with her before we go. I think they are both going to go into withdrawls being away from each other for that long!!
We leave on Saturday, so there is much to do! Prayers for a safe trip.
Wednesday, October 11, 2000 at 11:29 AM (CDT)
Tomorrow night is the big night for Michaela's benefit. Sadly, she won't be coming to the event. Traditionally her white blood cell count is at its lowest on the 7th day after chemo, which means she can get sick very easily.
The 7th day is tomorrow, and we just can't risk exposing her to the germs. We are flying out to Boston on saturday and we need her to stay healthy! She will be there in spirit and we'll have lots of pictures to share.
Her first appointment in Boston is on Monday. We are anxious to speak to the doctor and hear the game plan. We know this is the best treatment available, so there is nothing else to do. Prayers for a safe trip.
Monday, October 09, 2000 at 07:42 AM (CDT)
Its monday! Yea!!!!! Poo was nauseated the night we got home, but that was it. She has felt pretty good ever since. Her appetite hasn't been very good, but we talked her into eating some pizza last night. When she doesn't eat, we give her Boost shakes and energy bars. Usually she doesn't like to eat the few days following a chemo treatment.
She got to spend sunday afternoon and evening with Johnny, so she was very happy! She took her shot sunday night like a real trooper. We can't wait for that part to be over.
Auntie Lisa had a garage sale for Michaela at the American Legion on saturday and it was a huge success!!!!!!!! We think Auntie Lisa lost 5 years off her life before it was all said and done, but we sure do love her for it. We are very lucky.
Friday, October 06, 2000 at 08:20 PM (CDT)
We are home. This was most definatley the most unpleasent expierience so far. They didn't know we were coming, so it started out kind of hectic and went down hill from there!!!!!!! She was really nauseated this time around as well. We've been told that the nausea is supposed to get better as the treatments go on, but Micheala is just the opposite. I'm not surprised though, we have a pretty unique child!! :-)
She seems to be doing okay for the moment. Thank God for Zolfran (anti-nausea medication)!!!!!! We are usually home free after the 2nd day home, so hopefully she will feel better soon.
Thank you for all your guestbook entries, I don't know how we could get through this without the support we're getting.
Thursday, October 05, 2000 at 08:52 AM (CDT)
Well, here we go again! Hopefully all will go well today and Poo will be able to receive her treatment. Also, we're hoping that we have an exact date to be in Boston. It doesn't seem to be a priority to anyone but us. I guess the doctors over look the fact that we need to plan for a trip that long.
Auntie Lisa is almost done getting the garage sale ready. She has worked very hard, it looks like it will be a huge success! We will keep you posted on the next few days events.
Monday, October 02, 2000 at 09:19 PM (CDT)
We're baaaaaaaaaaaaaack........ We went in to the hospital today expecting Michaelas 5th round (14 rounds total) of chemotherapy. Instead, after checking her blood counts, we were sent home. Her absolute neutrofil count is only 800 and needs to be at least 1000 to do chemo, as it is so toxic. So, we wait. We will try again on thursday to see what her counts are. Its okay, we are going to enjoy are little delay as much as possible!!!!
We got out of the hospital a little after noon so we took advantage of the rest of the day and took Poo to the zoo! Her favorite part was the farm where she got a hayride, got to feed the goats, and pet the cows! Shes a true Minnesotan!!
Monday, October 02, 2000 at 07:03 AM (CDT)
Here we go......... Another round of chemo today. I just hope that the docs have finally figured out what it takes to keep her nausea down. Its been differant each time, so I hope they've got it together this time.
Michaelas birthday party was great! She loved Mary Poppins, as well as all the other kids. Mary was quite entertaining doing magic, balloon animals, and skits. She made Michaela feel pretty special which was pretty neat. She got tons of great gifts from everyone--- she's getting a little spoiled..... :-)
We'll let you know how these next couple of days go.
Thursday, September 28, 2000 at 08:30 PM (CDT)
Well, this weekend is the "good" weekend we always look forward to before her next round of treatment. Usually the last few days before a treatment she starts feeling pretty good. Michaela turns 4 on Oct 21st, but we are celebrating her birthday early! This saturday is her party!! We won't be here for her actual birthday, since we are going to Boston.
We went to the bakery and she picked out a Little Mermaid cake. Its something she has done every year. She is very excited about it, we've seen Little Mermaid about a thousand times...... :-)
Hopefully we will get some fun pictures from the party to post on the site. Thanks to everyone leaving her messages-- she really gets a kick out of us reading them to her.
Take care,
Monday, September 25, 2000 at 09:59 PM (CDT)
Well, Michaela had a great weekend!! Her energy level was up and running thanks to her blood transfusion on Friday. I don't mind them, you can actually see the differance in her face when its over. She goes from being very pale to having rosey cheeks, and lots of energy. It makes us happy to see her like that.
She spent Satuday night and Sunday at Uncle Joe and Auntie Annies and played with her favorite cousin Johnny. For those of you who don't know him, Johnny is 15 years old and is great with Michaela. She absolutly adores him and tells everyone he is her boyfriend! Its pretty cute. We have her on videotape telling us that she is going to marry him! It will be funny to play those tapes back to her one day... :)
Her counts are great, so it should be a nice, uneventful week. Next Monday the 2nd, we head back in for her 5th round of treatment.
Monday, September 25, 2000 at 03:40 PM (CDT)
Michaela had a great weekend! She spent Saturday and Sunday at Uncle Joe and Auntie Annies house playing with her favorite cousin Johnny. She is convinced she is going to marry him someday-- we actually have her on videotape saying that, we're keeping it ready for her graduation party!!
Her counts have been done again and they look great!!!!!!! She had a transfusion last Friday, which was good. She went into the clinic looking rather pale, and came out 3 hours later with rosey cheeks!
Thursday, September 21, 2000 at 04:05 PM (CDT)
Well, we have finally heard something on her radiation. It looks as though, given insurance approval, we will be heading out east. They said from about Oct 16th through the 1st week of Dec. From everthing we have been told by both docs and families whose children have gone through this, Proton Beam therapy is the best treatment to get. There are only 2 facilities in the country that offer it. So we feel pretty lucky.
Poo got her counts done again today and is in need of another blood transfusion. Her white cells are still pretty low but seem to be recovering slowly. We are lucky in that she doesn't often (knock on wood) run a fever during neutropenia, but her hemoglobin tends to drop. However, the transfusion is like liquid energy for her, so its a good thing! Take care.
PS-- check out the new pics of the girls!
Monday, September 18, 2000 at 01:38 PM (CDT)
Counts have been done again, Michaelas white blood cells are down to 500. I guess the bright side is that they will only go up from here. Prayers that she stays healthy during neutropenia!!!!!!!! We are still waiting to hear where we will be doing radiation, hopefully we will find out today.
On a better note-- we heard from Make A Wish------- and her wish for the playhouse has been approved!!!!!!!!! We are SO excited! She doesnt really understand that she will be getting one, but she knows what they are, and thinks they are a lot of fun. We should get one around next spring. We thought that would be best since winter is soon approaching....
Thanks for all the support and kind words.........Jen & Andy
Saturday, September 16, 2000 at 06:22 PM (CDT)
Michaelas scans show that her tumor has shrunk and that she appears to be responding very well to her chemotherapy. YEA!!!!!!!!!!!! :) We aren't sure where she will be receiving her radiation treatment. It will either be here at home or in Boston. We should here in a couple days if we will be heading out to the east coast.
Wednesday, September 13, 2000 at 10:05 AM (CDT)
Hi everyone. Michaela had her 4th round of treatment on the 11th and 12th. She was very sick afterward. She is still sick, but seems to be resting well for the moment. We spoke to the radiation therapists who informed us that the radiation is scheduled to begin in about 3 weeks and will be daily treatments lasting 28 days. Not so good news. We are trying to keep our heads up.
Thursday, September 07, 2000 at 02:02 PM (CDT)
Hello everyone. Andy brought Michaela in for another check of her blood counts and things do not look as good today. Her white cell count dropped quite a bit, as did her nuets count. What this means is we need to be extra, extra careful about germs. Hopefully she will avoid catching a viral infection and her counts will come up a bit and she'll be ready for treatment on Monday the 11th. We'll keep you posted.
Tuesday, September 05, 2000 at 02:40 PM (CDT)
Hello everyone! Michaela is having a great day today! Her counts are up and she is feeling great! We go in on the 11th for her next round of VAC and for a new MRI and chest CT--- please send prayers her way!
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