Sunday, March 30, 2008

By stander...

Dear fans- Hello from our hospital room! Today I keep thinking about Sammy's illness from completely different prospective. I was able to look at this journey from by standers side of view.It seems to me that Sammy's illness caries special and important meaning -it meant to unite people.The only way you can show you support is by getting involved and show your actions and feelings .We know of one story that in the afford to provide financial help for us one family got reunited and joined others when was not speaking to each other for years .Recognition of importance to help one another is real!In order to achieve desired results we look for help with in people we care for. Many people are questioning what if this happened to my family ? Would I like to get come support? As a result needless to say it had to happen to my son -something good is coming out of it ! I'm glad that people are reading this blog , staying connected ,reevaluate their position in life and what is truly important.
We have many supporters all over the world. We have many symbols and help signs from Israel, we have some spiritual items from Tibet from monks that are praying for Sammy and the latest is a bracelet given to me from Greece.My longtime friend just return from her hometown and said that this bracelet represent support of almost all the city's and regions in Greece praying for his quick and full recovery. It's amazing how many people that know Sammy and family or never met us is connected and staying tuned by my blog-I thank you all! I believe that G-d is helping us from day one by all the miracles that have had happened and continue happening.
I also believe that there is a good reason behind my strength ! G-d is rewarding us by how well we can do on our own too! I do believe now that there was a good reason that we got transferred to this hospital .My strength was given to me by G-d to reach out to others in need. Since no physiological support is provided here for parents that stay here with their children for many month - we have are support group now.If you had a bad day you can share it with me or other parent that is open for discussion. As long as I'm here in the hospital -Any one can talk to me about anything that's on their mind and it doesn't matter what their belief's are -We all made of a heart and the Soul -We all worry about our kids the same .In conclusion I think that we are very lucky to be at this point of Sammy's recovery and thankful to each and every one of you that are praying ,teaching your children to help however they can and providing much love and support to us . Stay tuned,stay well,stay strong. XOXO Sammy and Mom.

Friday, March 28, 2008

What do you think?

Hello friends. Today is 50Th day from transplant!
Every week Sammy goes for check ups back to Children's. And sometimes I will get a great news that his medications will be reduced a little or discontinued . He takes 4 meds in the morning and 3 at night/now/ and IV overnight.This are very strong medication that he must take for a while after transplant .Sammy has been having some stiffness in his legs lately,it somewhat interfering with his physical therapy. So ,another drug?Muscle relaxer?
As parents we both believe in alternative therapy before any additional medications are given. I feel that we have to give his body a chance to 'wake up' from long sleep.According to some studies 1 week in bed without movement will destroy strength of a muscle for a small child and it usually takes twice as much time to recover -Sammy was in bed for 5 weeks!So technically we should see him fully recovered ,by May 8Th .
I'm very reluctant to add anymore chemicals in to my child's body unless is life threatening.We all know that each medication has side effects and every time you give it to your child you don't know what reaction is going to be .Is it makes his condition better?Or worse?
We think massage-instead of the meds-it will take care of stiffness beautifully! We had to go though ,so much chemicals in the past 2 month-How much can 7 y.o. body can take?
What about alternative medicine ? Why is our grate grandmothers used it?This type of healing has been around for many century's and known to do wonders for people. I also believe in loving care and mother instinct, jokes and laughter, in listening to music and dance ,color therapy too. All this things effect us in our life's ,we just forgot it's part of it.This is may be what Sammy needs more of-not chemicals!?I know that not everything has scientific explanation -like special teas and herbs that do miracles when everything else had failed!
What do you think ?
How much is too much?
What would you do ?
How long can we test liver or kidney before it failed?
Do you want to find out?

Sincerely Mom and Sammy.

Thursday, March 27, 2008

Happy B-day grandpa Yuriy!

Hello everyone.
Today Sammy and Family gathered to wish Very Happy Birthday to grandfather Yuriy.
He is the best! Sammy and grandpa have a special bond.Not only they respect and love each other also Sammy one of Zeltser's that will continue family last name. So, when we toast to Grandpa we wished him to dance on Sammy's wedding day! Grandmother Yelena prepared Sammy's favorite dishes and took them to the hospital. Grandma said that when she visits us in the hospital her heart and sole stays here with us ,she can't wait to see him again-'He is like a magnet'. My dear husband has been driving to the city to see us every single day! When he comes he will play with Sammy ,read to him or sing a song.He says that it too quite and it's not the same without us at home.And as a rule always fall a sleep.And I know,here he feel safe,so he can relax.
As per mom ,I love all my children more than life it self and would take their pain upon my self at any given moment.Sammy is a survivor! He has to be stubborn to overcome this tough physical state. I'm his reminder!Just like a clock annoying and always there - tick-tack!
I love seeing Sammy smiling - giggling too. He makes me happy .Taking care of Sammy for weeks is something I enjoy doing.I know he is always looking for me, even knows sounds of my foot steps.As long as he needs me by his site nothing else will be priority. I believe that child will recover much faster and easier when mother is near and involved.I think that many of you/ if in this situation /would support their kids the same way I do ,but I would never want anyone else to find out what it's like, you feel my pain though this blog and I thank you ALL for that. XOXO Sammy and Mom .

Wednesday, March 26, 2008

You wanted -You have to get it!

Hello friends,
As I suspected earlier,Sammy has been slaking off ! We had few moments to experiment today. Of course there are things that it just impossible for Sammy to do by him self ,but there are some things .....
In the morning while in physical therapy- Sammy was standing in the walker with allot of support and constant push and help .Then his therapist decided to see what happens if he let him hang without further help.Sammy couldn't see his therapist behind him and start taking slow steps forward- all by him self!
At lunch time I had a chance to see for my self if we where right. We had a pizza party on the floor and Sammy loves thin crust cheese pizza. I put 4 small squares on the plate and helped Sammy with first piece. Than I said : If you want more -YOU have to get it! I can't help you now. Guess what happened then? Our big boy reached out and grabbed pies and ate slow, but ALL by him self! And then another piece !
So , from know on I'm taking ' You wanted-you get it' attitude! No more slacking off -Sammy!
As they say -Hard work -pays off! And that is our ultimate goal ! See as many improvements and returned body functions ,as possible! And I'm here to make sure it happens!
XOXO Mom and Sammy.

I believe..

Yesterday and today I have been witnessing Sammy staring to connect and engaging in allot more things than before.Things like after a meal he pushed away a small table , using his hands more to pick up small pieces of food , transferring cookie from left hand to right because it's more comfortable.He started to recognize his therapists and seems to remember people he met before.
Last night I had to wright up a letter and decided to live out room giving Sammy chance to fall a sleep.I was constantly picking back and forth and didn't tell him that I'm in the next room.
When I came back he was not sleeping ,as soon as I walked in and he new I was there ,he fell a sleep. All of this changes means that his brain is starting to connect and messages seem to reach desired destination.Hopefully soon we see more improved functions which was lost in transition.
I BELIEVE now more than ever miracle is happening and we are witnessing it .
I feel presents of G-d everywhere. In random people I meet and talk to,in some of the nurses that come to our rescue ,in fortunate coincident and other signs that I've seen along away. I BELIEVE that Sammy will be OK and up and walking in no time now. I hope you do too!
G-d Bless you , Sammy and Mom

Sunday, March 23, 2008

My thoughts...

Hello friends. This weekend Sammy had a special treat. We had a guest on Purim day and she brought allot of goodies and presents for me and Sammy.Sammy loved all the treats and specially 'Quinn Esther's head cookie' after he was done with that his face was covered in different colors .We read a great book of Purim and then..... We heard a knock on our door. After door opened we saw huge Bonny-rabbit standing in the door way. /every child got a small gift for Easter in the hospital/ It was so sudden ,we didn't expect to see talking 6 foot tall-Easter bunny and Sammy and I just burst out laughing.
All weekend Sammy was in the company of grandma Yelena and grandpa Yuriy. They took such a good care of Sammy ,while mom went home for a day.Mom ,Dad and girls enjoyed a Saturday at home together ,mom forgot where everything is in the house was and how to cook .
Family also visited old friends and even wished a very happy 1st B-day,to a beautiful and special Mirabella.After a great glass of wine my thoughts got to me .....It was a great party and as I was watching kids playing and hopping in the future Sammy can be part of it too just like before . I though about everyone that reached out to us,our friends that spent countless hours and resources to create this great website and support us from day one ,about people that we didn't even know that open their hearts to us ,how fortunate we are to have such a great support.I thought about how useless you feel when you see your child is in pain and can't do much about that,but only pray.I thought about that ,no parent or grandparent should ever see such a challenge and sadness in the child's eyes.I also thought about many miracles that happened on our path to recovery , how we found what we was looking for when least expected, that if we continue praying and I continue support my son's spirit G-d will help us again and again .That If I continue saying to Sammy-You we be OK! We will get you back on your feet in no time- he will finally believe in it and start to be more persistent and try harder.
All of this thought help me plan! What is our goal for the next week? What about you fans ?
How often do you think of us?Do we help you understand and appreciate life better cherish what you have now?Do you count your blessings ,like we do? Sincerely Sammy and Mom

Thursday, March 20, 2008

Bad Dream

Hospital bed, no fun and no toys,
Getting familiar with medical terms,
Then sterile room,chemo,transplant
When is this treatment come to an end?

I closed my eyes I can't see,but I hear
Some kind of voices and conversation near
Tossing around his life like a toy
They have to decide what to do with my boy.

First spoke Mrs Illness:I'm a Quinn of a sorrow,
I'll play with him today ,you'll decided tomorrow
Give him to me!!no worry ,no stress!!
I'm very well known my name's Mrs Death!

No way Death ,I'll fight you!!Turn around your slay!
You never lost loved ones,you just take them away!
Get out right now!Right now you were told!!
This boy doesn't need you until he is 120 y. old!

She was firm,but soft spoken,
She was young ,but mature enough
Her eyes was widely open,
Her name is -Her Majesty -LIFE!

She hugged him and kissed him,
She was so glad he is safe
Here is my dearest sisters
Please memorize their names

Believe- she is the oldest
Hope-she is the middle one
Faith- she is our baby sister
And I'm a twin to our sister -Love.

We always help each other
We will watch over you
Go home boy with your mother!
I feel it's time you do!

I closed my eyes I can't see,but I hear
My heart has been bleeding and I whanted to scream
I'm holding my baby -my son and my dear
I open my eyes ,it was just a Bad Dream

03/20/2008 G.Zeltser

Wednesday, March 19, 2008

Our base line

Hello friends,what a day! We are ,so busy that have little time to blog. So far Sammy had physical,speech,music,psychological therapy's today and still occupational and personal music lesson to follow. He barely had time in between to get his lunch. I'm busy with countless paper work and bills. You have to stay on the top of things . Its obvious now that I have to start paying close attention to my own health. Lock of nutrients , vitamins and fresh air is starting to take toll on my health.So I try to catch that minute when Sammy is in therapy and go outside for few minutes./some times while in therapy with him ,Sammy is concentrating on my face too much ,so I have to live the room/ Enough about me lets get to the best part of this blog.
First and for most important thing is to bring Sammy's condition up to BASE LINE level. We are waiting for Sammy to catch up with usual body functions. Base line is what our ultimate goal is for the rest of this month. He will understand more and be able to push him self to walk and talk again. But for now we are trying to bring out family pictures ,songs and things he use to love and do before.Sooner he reaches his base line -faster he will get better . At that point we will know what is his maximum capacity and goals for the next few weeks. We will keep assessing him on weekly basis to estimate what we can do to help him reach his goal. Truly yours Sammy and Mom.

Monday, March 17, 2008

What's ahead?

Good evening everybody,
Ever since we started rehabilitation, everyone who seen Sammy after treatment and immediate family has this silent question in their eyes: How much he remembers from his life before transplant ? I have been trying to find the answer to this question my self .Today I learned that Sammy not only understands me like before in both languages/Russian and English/ he also being little lazy to talk. I think we have to experiment more to get him talk again.When someone does everything for you there is no need to push your self to say anything. He remember more and more things.I feel that he has majority of his memory.He recognizes more people and things he use to do before.
It looks like we will be in rehab sometime until the end of April. At that point it will be exactly 3 month spend in the hospitals. We are looking forward to go home.It's exiting and scary in the same time. I missed my work and would like to go back ,but before that I have to make sure Sammy is safe ,that proper adjustments are made, wheelchair access and adequate transportation are in place, medical equipment ,part time help while I'm at work. We are looking forward 100 day mark on May 18Th.This is time for his first after transplant MRI that will determine how successful transplant went.At that point we will have about 65% of after transplant survival.
It's truly amazing when I open my eyes in the morning and I have Sammy by my side! I can make him laugh and touch his skin that still smells like milk -even after chemotherapy. Sincerely Sammy and mom.

Sunday, March 16, 2008

Zebra stripes....

Hello friends,
I was just comparing our road to recovery to Zebra stripes . Why Zebra you will ask? Our days away from home seems to be good and bad,just like Zebra stripes black and white. We have this perfect day and your wings of hope spread out wide and you know that everything is going to be OK. But there is not so exiting days like today and whole world crashes down on you shoulders. Sammy has been having problems with blood in his urine in the past .After two different antibiotics we thought it went away,but last night and today all day we have seen traces of blood in his urine again. I hope it's just a urinary tract infection ... He is and going to be on many serious medications for many month and years,some of those can cause kidney problems as well as chemotherapy . I feel that another sleepless night ahead of me today , just watch him sleep and pray .
Sammy on the other hand still showing improvement. He has been using his hands and fingers more. I give him bowl of 'lucky charms' cereal and he managed to pick out all colorful marshmallows. He's attention is more focused,he even watched kids music clip today. Everything is a hard work for Sammy even eating. His energy level is very low. He needs a break after each task .I know we must be patient it will take a while.
I just like to lift that curtain of his future and see him being active and go to school again.
But no one knows what our future holds ,my only hope that our zebra stripes keep going and going and going... Sincerely Sammy and Mom.

Friday, March 14, 2008

Firs time Out and about..

After long hard work and several hours of therapy ,Sammy was exhausted.But not too tired for fist time outside! Mom ,Dad older sister Marina and Sammy went outside /with a wheelchair of course/ We stopped at for some burritos and Sammy's mac n cheese and other good food we brought alone was unusually tasty.
It's very interesting,how new schedule have been effecting Sammy. When he dresses up in the morning after medications and breakfast ,he is expecting to go out of our room and do something!
We are looking in to different models of wheelchairs . We will need something with some extra gadgets for safety, because our hero Mr Sam slides down from the temporary one he has for now. His legs have allot of stiffness and many times he can't manage to bend his knees while sitting . On the bright side we are surviving this -what a ride this has been ! I'm grateful that we have our Fans to share all the emotions and experiences with .Thank you all for your continues support and comments.
I really like this quote that one of my friends just send my way -Winston Churchill ones said :
'If you going though h-ll ,keep going!' So ,we are taking that advise .
Sincerely Sammy and Mom.

Wednesday, March 12, 2008

No pain -no game...

Hello fans,
We decided to take a whole different approach to our daytime regiment. Instead of laying around and feeling bad for him self Sammy is in a 'Boot camp" awakening.No more P J's late in the day ,no more 2-3 naps during the day. We are taking back control of Sammy's schedule.
In the morning we are getting familiar with toothbrush again,even know Sammy doesn't brush it by him self yet ,but he knows how to hold it .He gets dressed in regular clothing now and sits in the wheelchair to eat his breakfast. After 3hours on and off therapy and lunch in between Sammy can take a nap. Than snack and play-book time. If our day is productive and Sammy worked very hard he gets rewarded with dinner in 'Big Red Dinning room' where some other kids and family's are gathered. If it's not too many people in the room and they are located at the far corner I will let him take off his mask.He is considered immune compromised kid and I have to take certain precautions with germs and other people around him that may be sick of carry some bacteria.Many other things are a concern and must be watched closely like food .No fast food, must be from allowed ingredients, must be on disposable plates with lids,freshly made and can't be sitting around open for a long time. If those things are not followed there is a higher risk of getting sick.Similar story with Sammy's room , everyone walking in must wash their hands ,put a mask on and have a very good reason for walking in...We have to keep protecting Sammy for many more month too come even after we get home . I have been a nervous wreck for the past 10 days to adapt ,as well as we can ,to a new environment.Otherwise we are trying to work hard and have fun too.How about you?? XOXO Sammy and still insane mother.

Tuesday, March 11, 2008

May positive Karma come your way....

Every day now I'm witnessing Sammy's awakening.Its like his body was a sleep for a while.
He moves his legs and arms more and stretching in the morning just like good old times.
Sounds becoming laud and last longer.I'm looking forward to hear a first word .
I have to thank our wonderful helpers-nurses that come to my rescue when it's time to give Sammy his oral medications. Most staff members are very accommodating and will go out of their way to help.
I got friendly with few family's here.You see what others go though and believe it or not our 'Big hard patch' becomes a very small one.I think, by engaging in conversation with other moms ,I get satisfaction of 'therapy session' with some one else having similar problems with their precious kids .I also learn to appreciate how much support I get from the rest of my family,when other's having hard time dealing with their spouses being away from home while in the hospital with kids ,as a result some couples tend to go grow apart.In such situation its very important what advise you receive from person next to you. By sharing my life experience, believes -I hope to change their point of view to a positive one,try to turn negative around and help them attract positive Karma. Enjoy gorgeous sunny day . So long ,Sammy and Mom

Saturday, March 8, 2008

My diary now -book later?

Hello fans , did you change time on every watch and clock you own today? I forgot!
I feel like sharing somethings that was on my mind .Believe it or not this is the first time I see gray color walls every ware in Pediatric section of the hospital! It's very depressing . Usually you walk in and See bright cheerful,vibrant colors or Disney characters or some other drawings but not here. The only room that has color is large visitors-play-dinning room.I invite Sammy to 'Go out ' to eat his food there,he gets very exited.
I do most of the things to take care of Sammy . Sometimes day goes by and you will see that ONE nurse only 1 time-somewhere in the morning between giving you attitude ,delivering medications and disconnecting Sam's overnight IV -just like this morning.As a rule it usually that one person over and over again. I'm glad that everything is going well and Sammy doesn't need as much medical attention as before.
I keep diary of ALL that's going on every day.It helps me keep his medications ,dates,specifics in line .His diet,water intake and some other important facts. Also it helps me keep up with his progress .I can always look and see how much he improved from another day.Sammy is in desperate need of therapy and this is the best place for it -that's why we are here!
I don't ever want to be caught off guard or be dependent on someone other than myself or my family.It always worries me ,that I missed something and this little person cant advocate for himself -mom has to protect her child that's why I'm here!
Sammy is relaxing today .He had a Special guest-his teacher and friend Mrs Lori J. They had fun,read some books and talked .Sammy relaxed most of the day . We have many appointments planed for tomorrow .
Have a great Sunday stay well , enjoy your family. Sincerely ,Sammy Z and Mom.

We got views

Today we moved to a new room,again!/this is our 7 Th room with in 2 hospitals!/However this time our view is Lake Michigan!! It's not only gorgeous - it's outstanding! This view can compete with most luxurious hotels in Downtown Chicago.
Also today we are celebrating 1Month since Sammy's bone marrow transplant.And since our family has both a donor and receiver of bone marrow we celebrate it twice.
Today the whole family gathered around Sammy and prayed . All of our kids ,parents together in one room just like in old days , emotional and happy for us !
It's amazing how much kids change just in few month .I feel guilty not being there for my younger daughter -Eva. She is growing up way too fast. I want to return home soon and reclaim mom's post at my household.I know that Eva and my husband are missing us terribly and we miss them too.
It's a very touchy situation where I think not only our personality's ,family ties but also relationship is put to the test. I believe it's very easy to grow apart when we are separated for months and have different views on the subject.I think we just got even closer as a family while going through this together - both of us realize ones again ,that we must be sole mates.
That's all for today,my friends XOXO SAMMY & MOM

Friday, March 7, 2008

Go Sammy

Today we have seeing first good result of therapy. Sammy started to hold and eat with spoon now. He also ask me for more food after he ate by pointing finger in to his mouth and smacking his lips together. This is something ,I'll take that!
At first you watch therapy lesions and they are just very simple ,but when you start seeing difference from day before you realize that this is great !
Go Sammy!!
We will return tomorrow with more......... Sincerely Sammy Z and Mom

Wednesday, March 5, 2008

Music helps

Sammy always enjoyed music.His sister Eva also has very good voice and musical pitch.
Today Sammy was part of a music class.For the first time we got out of our room.He was,so exited ! His therapist said that he responds to music very well and she likes to arrange individual music lessons that will help Sammy hear music and start making sounds .He still does not talk,but smacks his lips when hungry.
Sammy got ,so tired today after physical therapy.He was standing/with help of a special equipment/ And I will take that it's a start.Most of the time I have to live his therapy room because he is looking at me for help .
We are seeing little improvement in occupational therapy too.When I feed Sammy I try to engage him in picking up pieces of chips and put it in his mouth all by him self/he is getting better every day/.
Overall therapy's are 3 hours a day! /with some brakes of course/, so by 3:00pm his is tired.
We will return to blog on Friday most likely. Thursday we have first follow up visit to outpatient clinic in Children's Memorial -we are very exited to see our old friends again!
This week all of our children will come home/expert Sammy of course /,they all will be visiting us here in the Rehab Hospital.
Thank you everyone for your comments keep it coming.We love it! Sincerely Sammy Z &Mom.

Tuesday, March 4, 2008

Setting our goal -high..

New hospital.We are trying to adjust.I have been a nervous rack trying to stay sterile and try to protect Sammy without realizing that this place is very clean.I guess my previous experience gets to me ,I have to loose that sting little bit,let him get back to normal life now.Moms known to be little overprotective and I will always wipe my kids faces,get in to there ears,make sure their nose is clean -that what moms do and I'm no difference.
Getting back to our new hospital settings .This is truly amazing how many different approaches there are to physical therapy .This is the best place for rehab!
Everyone has been very accommodating trying to make as easy as possible on our transition.
Sammy is getting his assessment and future plan with the next couple of days.I what him to have a full & complete life outside of the hospital.
I'm very exited about the start.It will be hard work ,but nothing is impossible.Sammy's siblings was brought up overachieving and he is no exception.
I'm looking forward to see him righting his bike again.He was a very strong reader and loved his math before and I will not give up until I see him read again and doing his math!And of course last but not list -I want him enjoy swimming and many wonderful things that life has to offer.
We are setting our bar high and the sky is the limit! XOXO Sammy and Mom.

Sunday, March 2, 2008

From Winter to Spring..

It feels like Spring again.
I found similarities in how weather , season compares to the what we are going though .I always felt that it's winter and it was the best time to get though this treatment.We just watched snow coming down ,temperature dropping and people covering their faces outside - all though our hospital room window . It was OK! -because we were not going anywhere.
But today ,what a day ! It's significant to me that this first warm day a tease of spring- happened just a day before we are moving to Rehab hospital. It's almost like saying -we are done with the Winter - Sammy's chemo and transplant part and ready to move on.
Spring time warm days are coming!-Rehab ,learning to walk and talk again ,we will have to face some challenges ,but we will also be able to take a stroller outside for a fresh air.
If we look even further -when Summer comes- Sammy will be running ,righting his bike again then we can say-'Its ALL behind us now he is safe and everything will be OK'.
It was just a thought ,what do you think? Sincerely Sammy and Mom.

Saturday, March 1, 2008

Farewell to -4 West

On Monday we are moving to another hospital. Sammy is starting new page in his life.We are cautiously exited. Aggressive speech ,occupational and physical therapy is our new target.

We are saying Goodbye to our good friends in Children's Memorial.
We thank All of our truly dedicated professionals: Our Doctors-Thank you for getting us though this serious and much needed treatment,our Nurses that always was there for us ,specially our highly energetic nurse -Margaret that always managed put Sammy in to the bathtub .Our friends nursing assistants specially-December -who's Sammy kept calling September, 4 West office staff, our wonderful cleaning lady-Loretta and hostess-Barbara from food service ,our social worker Justine ,our chaplain Jim .
Thank you 4 West and Stem Cell unit -Thank you !!! You Rock!!!
Sammy and Mom will be frequent visitors at Stem Cell clinic in the next several weeks for various treatments and check ups .
We are taking one friend alone with us -it's Sammy's Ducky pillow-toy-friend that's been though chemotherapy,transplant and intensive care unit and never left his side.
We are ready for one step closer to Sammy's full recovery and long healthy life.

We will Blog from new room next week.Please stay tuned. XOXO Sammy Z and Mom.