Friday, May 18, 2012

The hospital network blocks blogspot sites

So for those of you following our posts on this site we have had quite the eventful recovery week, (or at least what should have been a recovery week). I found out that the hospital blocks access to blog pages for security reasons. I'm an IT guy, makes sense to me; but when you are keeping a blog of your daughter's events, trying to circumvent the system just does not seem like such a priority. Rather than rewrite the entre week of events, I will simply copy and paste what has already been written on Anya's CaringBridge web page.

One day at a time..
Written May 13, 2012 10:27pm
What an amazing event we got to experience last night!!! Since on Friday night Anya did not feel the greatest I was a little worried that going to a public event on the following day would be way too hard for Anya. But the prayers were answered and she was up to being outside. Peter was quite happy to push her around on a wheelshair. She was just beaming with excitement to see her friends and sooo many people from our church family, and all the wonderful supporters from our Prescott community. I have to say, being born and raised in Ukraine, I am still quite shocked in how fast the word spreads around here, and how people just jump in to help, and how I admire this part of american culture.
I am SO grateful for Chloe, Anya's friend who she loves to be with so much. This kind and thoughtful girl gave up her golden Bday plans to offer this beautiful evening for Anya! Thank you Emily(Chloe's mom) for being intune with your daughter to create such generous event. It was a night of prayer, unity. The lanterns were just magical in that night sky....Heavenly Father's spirit was felt through, He was in charge and his angels on earth acted upon that inspiration. I am SO grateful for everyone who participated in the event, donated their time and funds for us, willing to pay an outragious price for a cup of lemonade for us.... I am humbled and so grateful and don't know if I'll be ever able to repay you all for your kindness and open hearts....
Today was harsh on Anya right from the start. She stayed on the couch all day, with no energy and quite depressed.:(((((((((((((( I think it is finally becoming real to her. It just breaks my heart... Mat and kids were at church and Anya had her emotional break down. Even though it was hard on both of us, even though it breaks my heart to see my girl asking a "why" quiestion, I am still grateful to our Maker, our Father in Heaven for letting us talk it over and pray together. She was upset that her fever was spiking a little, she did not want to do anything and just cried, and we cried together so hard for the first time since she was diagnozed... She does not want to go to the hospital, she does not want to take those nasty meds, she wanted to be held and she needed to let it all out and cry... She could not understand why would Heavenly Father give her cancer if he loved her so much. I know why, but try to convince a little girl that it's all worth at the end, that she will be stronger than anybody, that heavenly plan for her is one of a kind and she was worthy to take this test so she can be polished like gold... This is going to be a journey for our family to discover Heaven in all different level, to live with Christ like it's the last hour of our lives, to look up for help and wisdom always....
We prayed for a better day tomorrow...
God bless you all

Day two on fever watch
Written May 15, 2012 8:38pm
With any chemo treatment there is always a risk of catching a fever. The problem with that is your body is trying to fight a possible infection without having a front line of defense. Anya's White Blood cell Count (WBC) normally would be in the range of 10,000 cells per microliter, today a week after chemo her counts are 200. With the fever coming and going the Doctors and nurses have placed her on antibiotics and observation. Once she can keep the temp down for 24 hours, they will let her go home, but not today...Anya misses home and her friends, but for now she is just trying to build those counts up. We will find out tomorrow if she will be ready for her next round of Chemo or if we need to wait. This is a cat and mouse game we do not wish on anyone.
God bless


Day four of Fever watch
Written May 17, 2012 10:22am
Here we are at the beginning of day four of FeverWatch 2012 (Sounds like we are on a TV series) Anya has had a rough couple of days. She had her first blood transfusion yesterday. Her counts were just not coming up as fast as the Doctors would like so they decided to give her some help. She is still having fevers so her stay here keeps getting extended.
Yesterday was even more complicated than usual because Dad had to leave for an appointment in the afternoon and Mom was at United Hospital in St. Paul getting her own transfusion. So Anya was a brave little girl and toughed out a couple of hours on her own (with the nice Nurses (of course)) Thank you to Suzanne and Katie for keeping a watchful eye on her while Dad was running errands. Life is definately proving to be difficult right now. Mom is now home and fine, hopefully we will be able to see her later today.
Babyshka (Russian Grandma) flew into town yesterday and we are very happy to see her back with us, She will be here for a few months so that will be awesome help.
The most difficult thing right now for Anya I believe is that reality of the situation is finally falling into place. Her hair started falling out yesterday in big clumps. I remember being grabbed by the hair as a child (whether in play or not) and being lead around the roots of my hair. Anya would grab a chunk yesterday and say "here ya go Dad..." she makes me laugh, just with the expressions on her face as she is doing this. It was hilarious. We are collecting the hair right now and hopefully find some use for it. I'm thinking maybe we could find someone willing to make a hip hat for her. We'll need to do some more checking, but for right now we just keep moving forward.
The plan for today is to get a chest Xray and see if we can figure out why she keeps spiking fevers. All of her blood tests are coming back negative, meaning there is no infection in her blood, but the fever keeps coming back, time will tell.


Smurf this...
Written May 17, 2012 8:23pm
OK, so it has been 9 hours since my last posting and lots of good stuff has happened and one bad one. I now watched the Smurfs five times today so I am a little smurffed up in my writing ability...
The good things were that Mom, Grandma and Evan were able to come out for a visit and boost Anya's spirits for a bit. It was short lived though as we needed to part ways when Evan got too tired.
Anya was feeling grumpy all day today because she is tired of getting poked and prodded all the time when all she wants to do is sleep. Her pains are being managed better now that the doctors have prescribed a low dose of morphine on a continuous drip and a happy button...( I think they should prescribe a happy button for the parents too) ((just sayin'))
Mom teared up when she came in and saw that Anya's forehead was a little larger than yesterday. But she held it in and was strong for Anya. When Anya saw that her little brother had shown up her spirits definitely brightened. We played for a bit and had some lunch, then Anya said, "I'm ready to clip it off". We got out the clippers and buzzed her beautiful new haircut. (Thank you to the ladies at Salon 80 in Cottage Grove for doing such a beautiful job on her 'Pixie Cut') Anya is keeping the feather she received as a reminder of the great spa day she had. She said she will put it in her smash book, as a good chunk of hair also pulled out last night.
When Mom was here Anya was able to get a shower and clean off all of the little hairs that have been bugging her. She looks a lot like Sineade O'Connor with her new do, but she now is complaining of the tiny bristles bugging her, I think it is time to break out the BIC...we'll see. maybe I can just get some sleep tonight ;)
As to the one bad thing...she spiked another fever today 102.9 we are still on the look out for the elusive reasons behind it. Hopefully soon we can figure it out.
Sending our luv and thoughts to all of you too.
Thank you for your prayers, they really do help.


Thursday, May 10, 2012

Anya's new -do

Thanks Salon 80!!!
     Anya had a great day today! She was feeling awesome, finally separated from BYOB (Bob, the Y is silent ;D). Not being drowned in the kitchen sink of meds, Being outside and enjoying the great weather. The high light of the day was the opportunity to get her hair cut. She is taking this whole challenge on her own terms and getting her hair done the way she wants to. Thank you to the ladies at Salon 80 in Cottage Grove. When they heard that Anya was looking to get her hair styled, with in an hour they found an available time with Jess that could Anya could have a hair cut. Anya was very particular about the style she wanted and even brought in a stencil drawing of what she was hoping for. Jess did a great job with the style and even included a feather that Anya has been asking for over a year for. Thank you to Laura and Tracy for coordinating everything. You guys in Salon 80 are the best!!!

     On Saturday May 12th, an event has been planned by one of Anya's best friends, Chloe and her Mom, Emily, to have a lantern lighting at the Prescott Baseball Field on Ash Street. The link to the event can be found here.!/events/138465172953978/ 

     So far there has been an amazing response on the facebook invitation and we are so humbled to see so many people in our surrounding community, church and additional community churches in the area, so willing to help. We appreciate all of your efforts and we are looking forward to a really enjoyable evening with you. We would love to invite anyone else who has not seen the facebook page, to come out for an evening of fun and enjoyment as we celebrate life, community, and support in the fight against childhood cancer.

Wednesday, May 9, 2012

     Anya is home today after her first five day set of treatments. She is so happy to be home in her own bed and with her family. We have missed each other immensly. Her blood counts are still good, but with this regimen of chemo we expect those counts to crash in the next week or so. Anya decided to go get her hair cut this week. It will fall out eventually, but she has decided to take things according to her terms. She will start with a shorter cut and then move on from there. I wish I had an ounce of the courage she has to tackle this beast. She is a trooper!!!

    Anya and her sister have decided that they want to raise a couple of lop earred rabbits (2 or 3). we are on the search for some in the area. If anyone has any ideas please let us know. We are currently creating a fun little rabbit hutch for them, but we don't have the critters yet. We were all surprised that Mom actually agreed to the proposal the girls gave about the idea. I checked with the Doctor's and as long as the animals remain outside it should not be a problem. I am so impressed with Nadia and Anya at the way they are enjoying each others company so much more than a few weeks ago. A Dad could not be prouder.

Tuesday, May 8, 2012

Hi again,

     Our family was deeply touched today by many of Anya's classmates and good friends. Apparently there is a special party celebrating a huge mile stone. Anya's friend Chloe is turning ten this week!!!! Yeah, Chloe!!!! We are so happy for you and look forward to celebrating with you on Saturday!!!
     Thank you so much for your visits and gifts. We are really looking forward to bringing Anya home later today for the first time since starting her chemo. She is very homesick and is looking forward to being back in her own bed. The doctor's have assured us she can be outside and living a normal life as long as we are careful. She will probably need to wear a mask to protect herself from harmful germs and molds. She may be in a wheel chair from time to time, to help her conserve her strength. The biggest thing we need to be careful of is spiking a fever.

Thank you again for reading our blog and keeping in touch with our little miss Anya.

Luv you all and see you on Saturday.

Here are some Pics from this weeks

Hi Everyone,

      So here we are on day 3 of a five day stint in the hospital. We have learned many new and interesting things. We learned that she misses home and her family and friends immensely!!! She is very home sick. We have learned that fresh flowers are not a good idea on the hemotology\ Oncology floor of any hospital because there tends to be bacteria and mold spores in the dirt that can cause serious problems with Anya and all of the patients in the ward. (Anya's Mom brought a potted plant on accident and the nurses were pretty rough ;D ) We learned that some kids have have latex allergies so only Mylar balloons are allowed on the floor too.

     Anya's new best friend is a really skinny guy named B.Y.O.B (pronounced Bob) [Bring Your Own Bag] Sometimes he rolls around with a scarf(maybe Ascot is the more manly way to pronounce that)((maybe not)) sometimes he descides to accesorize with the Doctors stethascope, or not. He always has his bells and whistles though. We found out that if he travels on the elevator he tends to get the hiccups. We went on an excursion to the Stars cafe on the first floor and as soon as we arrived, the hiccups just would not stop and his whistles went off and we had to leave with our lunches in hand to get the hiccups worked out.

     We have learned that Anya loves craft projects. Some of her friends have brought wonderful little craft projects like a heart shaped jewlery box that she can paint with markers and a pink cat that she can decorate. Also she has a few different journals that have already been put to good use. Anya would like to thank everyone who has been able to come out for a visit or have sent a little gift. It truly does brighten her day and her spirits to see so many friends and recieve all of your emails, cards and well wishes as we begin this journey all together.

      She apologizes for not being able to reply back quite as quickly as she would like. The chemo therapy zaps her strength pretty quickly. We have been working with the nursing staff today to find a good combination of medications to balance the amount of chemicals to kill the cancer cells but also to counter act the side effects of nausea and pain. The side effects are not severe, but annoying. Add on top of that her desire to be home and she comes out a little "Blahhh!!!!" as she describes it.
We have one more full day (Tuesday) here in the hospital, and sometime early Wednesday we should be discharged to go home. From there we have a clinic visit on Friday for a Chemo "Booster" and then she is home for another week. After that, starting on the 17th she will be back in for her next five day "camping trip"...So far so good.