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Monday, January 14, 2013
Hello All,
Elizabeth and Breanna are getting over the flu. Sarina has been having some big knee pain for a bit. The doctor now thinks she has tendinitis. She had to stay off it for a week and use a pain patch. So far no help. She can go back to school, but will have to use her wheelchair, she is not happy.
Heather
Tuesday, November 13, 2012
I can't believe that Sarina and Elizabeth are 16. I think back to the day they were born and still can't believe how good they are. Doctors didn't think they would make it 24 hours let alone 16 years. They have had some many obstacles to overcome and they did it with dignity and strength. I am so proud to be there mother.
On a sad note Sarina has lost two friends from camp in the last two months.....in case you missed me saying this before...CANCER SUCKS!!!!!!!!
Heather
Monday, July 30, 2012
Hello All,
Summer is very hot here. All is doing OK. Still no idea why Sarina is having hand weakness. We are trying to get some OT for that.
Sarina's G-tube hole is not closing. So on Aug 1 they will operate. The DR will go in, see why it did not close and then close it.
Wish her luck.
Heather
Tuesday, May 29, 2012
I can't believe that I have not updated in a long time.
So here is a quick update......
Sarina and Elizabeth are finishing there first year of High School. They love the school. Elizabeth is a Theater Major and Sarina is a Fine Arts Major. Elizabeth is doing well on the medical front, only new thing is braces on her teeth. Sarina had a few new things to deal with, braces on her teeth, glasses and hearing aids. She is doing well and stable besides that. She did just have an MRI to see why she is having trouble gripping things with her hands.
Breanna has had a few ups and downs. She has been passing out. She was in the hospital having a battery of tests and in the end they think it was her heart. So they put her on some medication and she is getting better. Her diabetes is still up and down. We are going to be switching her insulin pump soon and hope that helps. The heat is not good for her so that is something we will have to deal with as summer is fast upon us.
I will try and update better.
Heather
Friday, December 30, 2011 9:16 PM CST
HAPPY 2012 to everyone!!!!!!!!
Sarina had the biopsy and did very well. We are waiting for the results and what we do from here. Sarina and Elizabeth LOVE High School. Elizabeth will be in two plays in Feb.
Breanna is having some hard times right now. She was passing out in school and even after an inpatients stay we are not sure wjat is up. She is back on the insulin pump and now on a heart moniter.
Jan we see tons of doctors for all three girls.
Heather
Friday, October 14, 2011 4:32 PM CDT
Hello,
Thankfully the lump was nothing, YEA. We saw Neurosurgery and the biopsy will be Nov 3, wish her luck.
Heather
Wednesday, October 5, 2011 9:22 PM CDT
Wow,
Were did the time go. Been forever since I posted anything.
Ok a very quick run down of the summer. Breanna had her wish trip and meet the cast of I carly. It was so very cool.
Girls did art camp again this summer and had a blast. We did a cruise, not a great experience, but we did swim with the dolphins, awesome.
Breanna is loving fourth grade and Sarina and Elizabeth are doing great there first year of high school.
OK, medically, still waiting to do the biopsy on Sarina, about ready to give up on the one. Found out she had a cyst on the ovary. Then they found a small lump in her breast. Oncologist is not very worried and we will do a repeat ultrasound at the end of the month.
Breanna had a rocky summer. More seizures than we would like. She had a big one in the pool at camp and went under water. They had to call an ambulance. She had a little seizure today at school. Looks like she is up to one a week. DR said she is at toxic levels with current seizure medications. We see the neurologist tomorrow to see about changing medication.
Elizabeth is doing great.
I will update when I know more.
Heather
Friday, June 3, 2011
Sorry it has been so long since I have updated. Nothing really new here medically. Sarina is still waiting for a biopsy date. The heat is really making her so tired. Sarina and Elizabeth will be starting high school in September. They graduate 8th grade onthe 16.
Breanna is having tons of issues with her insulin pump....wish I could throw it out the window. She is getting a Wish from The Marty Lyons Foundations. The end of June we are off to Los Angels to meet the cast of ICarly.
Breanna and Elizabeth leave for Camp Can do in the morning. They will be gone for 4 days.
Heather
Monday, March 21, 2011
Hello All,
Sarina was inpatient last week. She was having very bad headaches. They were finally able to get rid of them.
Thankfully she was home in time for Purim. She is now much better.
Heather
Saturday, January 22, 2011
Hello All,
Please don't forget to sign the guestbook before you leave. The girls love to see notes for them.
Surgery is off again.....we are still waiting for the ST Chris lab to open...no date yet.
For some GREAT news. Sarina and Elizabeth were picked to be in there school's National Junior Honor Society...only 44 kids were asked. There is almost 1200 kids in the school.
Now the bad news...Sarina had some medical tests today. We are still waiting on some results, but her hearing has significant decreased. They want her to get a hearing system. She is so not into that. We see them again in 3 months.
And for the ugly news....Breanna's school nurses SUCK. They called me at around 1:30 PM to say she was in the nurses office not feeling good. They did not think she was having a seizure so put her on the phone. She was repeating herself...a seizure thing for her. I told the nurse to call my parents since I was at the hospital with Sarina and thought that Breanna was having a seizure. So they call my parents and then send Breanna down the hall to get her stuff from her classroom. Did I mention that she was having a seizure. Well she passed out in the hallway. As luck would have it my sister and BIL were in the building. My sister heard someone say that a kid passed out in the hall and she was sure it was Breanna. She got to the nurse the same time as my Dad. The nurse still is not sure it was a seizure. My Dad took her home. The nurse then calls me to tell me what happens and was sure she was not having a seizure when she sent her to her classroom. At that point I had no idea about any of this...so I am freaking out. As soon as Sarina was done the test she was having I call my Mom. She filled me in and said that Breanna was resting, but ok.
Heather
Monday, January 3, 2011
Wow,
Sorry it has been some time since I have updated. I want to wish everyone a Happy and Healthy 2011
Hanukkah was GREAT. The girls got so many things. We went to Washington D.C. for The Childhood Cancer Awareness Tree lighting. We even got to tour the white house.
All three girls made Honor Roll for the first report card....way to go girls.
Sarina has been able to go to school sometimes. She is very happy to be out of the house. We had some snow during winter break, not too bad.
We had a fun New Years Eve. We spent four hours at the Funplex. They had a kid party. We ate, did bumper cars and go carts and played arcade games. Then we cam home and watch the ball drop.
Sarina saw the neurosurgeon today. Looks like the biopsy is back on. Don't have a date yet, but they want to do it with her awake. They don't think putting her under would be a good idea with her heart. They call it a twilight sleep so she will not feel anything or remember it. I will let you know when we have a date. We see lots of doctors this month and have lots of tests. Wish Sarina luck.
Sarina saw the neurosurgeon today. Looks like the biopsy is back on. Don't have a date yet, but they want to do it with her awake. They don't think putting her under would be a good idea with her heart. They call it a twilight sleep so she will not feel anything or rember it. I will let you know when we have a date. We see lots of doctors this month and have lots of tests. Wish Sarina luck.
Heather
Saturday, December 4, 2010
Hello,
Sarina has been better, she was even able to go to school for a few days.
She did have her MRI's done. The brain one was fine, waiting to hear from ortho about the wrist. They might do a bone denisty test.
We meet the Eagles' Mascot Swoop today.
We are having a good Chanukah.
Heather
Monday, November 22, 2010
Sorry it has been so long. Just that everytime I want to post something I realize it would just be a vent against doctors.
Here are the girls at Halloween.
Sarina was Salior Moon, Breanna was Luna the Cat from Salior Moon and Elizabeth was a nerd.
Sarina and Elizabeth turned 14. 
Thank you for all the b-day wishers.
We went ice skating and meet a Flyer player.
On the medical front and a rant....
Sarina's MRI was canceled due to the fact that the machine went down...so now we try for Dec. 1. Her GI DR is no good...did a weight check in, lost more weight and didn't even get to see the DR...they will call with what the DR thinks...I would tell you what I think....but I have to keep this a G site.
They said that if the lab is not open by Dec 1st they will do a frozen biopsy so we can see what is going on. I have heard nothing yet.
Hope everyone has a VERY Happy thanksgiving.
Heather
Tuesday, October 26, 2010
Hello,
Sarina had more heart tests and went on some new medication and off others. She actually made it to school for a day. Then she came home, fell off the computer chair and hit the wall. She broke her wrist. So she is in a half cast on right now. She has been unable to go back to school.
Breanna had some more seizures. She passed out in the school yard at school. So we decided to try the insulin pump. Maybe if her sugar is in line the seizures will not be as bad. So we are still in training mode. She is hooked up to the machine, buut only water go through it right now. GREAT NEWS... Marty Lyons Foundation is going to give her a wish...... So Breanna being Breanna has picked some big wishes. Her first one is to be on Food Network Cake Challenge...She wants them to make a cake for her. So we will see if they can do this.
We can't wait for Halloween. I will post pictures soon.
Heather
Thursday, September 23, 2010
Hello,
Well we had a bad week here. Sarina started PT again. She is having a great deal of hip pain. Sarina says it feels like the hip comes out of it's socket. The therapist says her ligaments are tight.
Tuesday night Breanna had a big seizure. Srina we upstairs to get Breanna a change of clothing and as she was coming down the stairs she feel down the rest of the steps. She hurt her hip.
So today Breanna had another seizure at school. She is so afraid of having another one. Wish we could rush her getting a seizure dog SOON.
Heather
Saturday, September 18, 2010
Here are the girls on Rosh hashanah.
Sarina missed this whole week of school. She has been so dizzy. We pushed up some heart tests and we will have them all done on Oct 15. She will re-start PT on monday.
We had a nice Yom kippur.....here are the girls.
Don't forget to sign the guest book.
Heather
Saturday, September 11, 2010
Sorry it has been so long since I updated. We have been so busy and I was not sure what to write.
Sarina is having heart and blood pressure issues. We had some heart tests done and still need some more. Her herat rate is fast and the heart is enlarged. The hole she has seems to be a little bigger. We will know more with the tests done in Oct and Nov.
School started her on Tuesday. Everyone had a good day. Sarina missed Wed because she was not feeling good. We did get to some of the Rosh Hashanah services on Thursday. We took Sarina to the DR on Friday, she has strep... so she is resting and on medication.
Please sign the guestbook.
Heather
Thursday, August 5, 2010
We saw the Cardiologist last weeek for Breanna and Sarina. They both came home on a holter moniter. Sarina's heart is now enlarged.
Sarina was able to go to Camp Can Do on Sunday..
I spoke to the cardiologist.
Sarina is having high blood pressure at camp (she comes home Saturday). So we will do some blood work next week and put her on heart medication. We will also do a stress test the end of the month, maybe do a tilt table test and repeat the echo in November. The Neurologist wants to wait to do the biopsy once the lab is open at St Chris. He will start her on some medication to help the mitho and the heart.
Breanna does not have the ASD (Atrial septal defect ) as we thought, or she did have it and it closed when she was a year old like they told us. What she has now is PFO (Patent Foramen Ovale), which is also a hole in the heart just a different place. She never gave me the actually size of it. We did not talk about having surgery to close it. The neurologist thinks that we should really look into closing it. We will see what the DR says at her next visit.
Please sign the guestbook.
Heather
Monday, July 26, 2010
We are back from Camp Sunshine. We had such a blast. The place is FANTASTIC.
I have tons of pictures. Hope this works http://photos.walmart.com/walmart/shareethumbnailshare/AlbumID=3795194001/albumcount=1/p=949241280021794975/l=2730005001/g=3142461/cobrandOid=1011/otsc=SYE/otsi=SALB/pns/walmart/share/p=949241280021794975/l=2730005001/g=3142461/cobrandOid=1011/otsc=SYE/otsi=SALB/adid=1500000000000023747290
So today we saw the cardiologist. I was sure this would be a quick follow-up how wrong could I have been.
To start with Breanna has not seen the cardiologist for over 7 years. Her ASD (hole in the heart) we were told was closed when she was a little over a year old so no need to go back. We only went now since she now has the mitho and that may affect the heart. Well the hole never closed and now they are a little worried. So she came home on a holter monitor to check her heart for 24 hours. The DR will talk to us after the results are back.
Sarina has been having the rapid heart beat and the other cardiologist we saw six months ago said it was not affecting the heart and we were cleeared. Well it turns out that now her heart is in largered. The new DR is upset that it was such a change in just six months. She also came home on a halter monitor. She will also have a stress test, another echo in three months and maybe a tilt table test. We will up her feeds at night since she has lost some weight and will see what the tests show us.
Heather
Monday, July 12, 2010
Sorry been a while.....computer broke....I HATE GATEWAY!!!!!!
OK, so computer is back and running.
We were in a car accidents a few weeks ago, van is in the shop. Breanna and I went to the hospital. Breanna was bruised from the seat belt. Sarina is having some back pain. I screwed up my shoulder and ankle. Will see the DR tomorrow.
Sarina was to have the biopsy on July 8th... they cancelled...hate that. We now are set for Aug 19....wish her luck.
We go to Maine for "Camp Sunshine" in a week, YEA!!!!
We are trying to get a seizure dog for Breanna.
Please sign the guestbook.
Heather
Friday, June 25, 2010
School is out and summer is here.
We just got back from a week at the beach. We went to Wildwood NJ and had a blast.
http://photos1.walmart.com/walmart/thumbnailshare/AlbumID=3647535001/a=3142461/
OK, So we are set up to do the biopsy for July 8th.... then again we might not do it. Still no word if the lab will be open. And now nerologist said that someone from neuro has to be in OR...so I call on Monday and see if they can do it on the 8th....
Update when I know more.
Heather
Friday, June 25, 2010
School is out and summer is here.
We just got back from a week at the beach. We went to Wildwood NJ and had a blast.
http://photos1.walmart.com/walmart/thumbnailshare/AlbumID=3647535001/a=3142461/
OK, So we are set up to do the biopsy for July 8th.... then again we might not do it. Still no word if the lab will be open. And now nerologist said that someone from neuro has to be in OR...so I call on Monday and see if they can do it on the 8th....
Update when I know more.
Heather
Tuesday, June 15, 2010 2:26 PM CDT
Hello All,
I know it has been a while. Sarina has not been feeling well at all for the last few weeks. She is always dizzy and having stomach issues. We took her off one of her stomach medications. She will see ortho tomorrow to set-up the biopsy and all three girls see Endo on Thursday.
Elizabeth and Breanna went to the ACS camp for siblings, they had a blast.
We went to Sesame Place on Saturday. It was VERY hot, but we had a good time.
School ends on Friday and then we are off to the beach on Monday.
Heather
Sunday, May 16, 2010
Sorry been so long since I updated......
Been a busy few weeks here.
Sarina has been having bad stomach pains, she is better now. We see GI in 2 weeks. We see ortho in June to set up her biopsy for july.
Breanna gave us a big scare on Monday. She had a BIG seizure and her sugar went so low, they needed to call 911. I got there in time to go in the ambulance with her to the hospital. We lowered her insulin and she is better now.
We lost out sweet, kind, 16 year old dog Kira a week ago. The girls are very sad and want a new dog soon. I think we will wait a little bit.
Breanna got her very first hit in softball yesterday. We are all proud of her.
Heather
Sunday, April 25, 2010
Here is Breanna playing softball. She did try to bat again.
Sarina did get the cast off her arm. The break is almost all healed, she does still have to be careful. We did some stomach tests on Wed, she is OK. Still waiting to hear what the new cardiologist says about the fast heart beat.
We went to Franklin Square on Saturday with Starlight. Had a FANTASTIC DAY.
Heather
Monday, April 12, 2010
Hello,
Sarina is doing well. Arm is doing better. Her heart is still beating fast. THe oncologist is going to call the head of cardiology and see what we can do. So again we just wait and see.
Breanna had her first softball game on Saturday. She got hit with a pitch from the pitching machine in the chest. We took her to the ER and they first said it was a broken rib, but later said just a bad break. She had a sling for a few days and seems much better today.
Don't forget to sign the guestbook.
Heather
Thursday, April 1, 2010
Hello,
Happy Passover to all.
Here are the girls on the 1st night....
Here they are on the 2nd Night....
Yesterday Sarina fell and broke her elbow. We saw ortho and they sasid it is broken in one maybe two places. She picked a black cast. We see the DR in three weeks.
Heather
Thursday, March 25, 2010
Hello All,
Been a bit since I have updated. All is well here. We have SPRING...YEA!!! Lots of outside fun for the girls.
All three girls made Honor Roll for the second report period. We are so proud.
Passover starts Monday night, way too much to do to get ready. Thankfully Grandma hosts the Sedars and all I have to do is help cook. Breanna can't wait for Grandma's World Famous Matza Ball Soup.
Heather
Don't forget to sign the guest book.
Wedensday March 3, 2010
Sarina has been sick all week. Her stomach realy hurts and I know she lost weight. We will see the neurologist tomorrow.
Sunday, February 28, 2010
Hello,
Well we had more snow here. Thursday and Friday there was no school. Now they are saying more snow on Thursday. Is it Spring yet?
We were able to get to the circus on Thursday.
Saturday was Purim. We made Hamantaschen.
We had a fun time at the Purim Service. This year the theme was "A Night in Paris". Breanna was a traditional costume, she was Queen Esther. Sarina was a French women from long ago, Elizabeth was a French Model, Brian was a chef and I was an Artist.
Don't forget to sign the guestbook.
Heather
Thursday, February 18, 2010
Hello,
We did get out from under the snow. The girls started back to school on Tuesday. Now they say more snow will be here on Monday...AHHHH!!!!!!
We are all doing well. Sarina is having some stomach issues, but besides that is good. We see some doctors in March and we will see what is what.
Heather
Thursday, February 11, 2010
Hello All,
I HATE SNOW!!!!!!!
So last weekend we got 28.5 inches of snow.... We were stuck in the house till Tuesday. Then Tuesday into Wed more snow, another 18.3 inches fell. We are still digging out. They say more snow on Monday...I might go crazy.
I had a good birthday, with the girls and family.
Sarina has a bad cold and this morning her g-tube came out. Thankfully I was able to get a new one in, if not there was no way I could have gotten the car out to go to the hospital.
Pray the snow melts quickly and I ABLE TO LEAVE THE HOUSE SOON. tHE GIRLS HAD NO SCHOOL Monday, Wed, today and they already called no school for tomorrow. They also have Monday off for President Day.
Heather
Sunday, January 24, 2010
Hello,
I have my computer back YEA!!!!!!!!!
Sarina is doing well....she has been headache free since leaving the hospital. She is feeling so much better. She will have an EEG on Wed.
Breanna is having more and more leg pain. She crawled out of bed today, took the stairs on her backside and crawled to the sofa. She said it hurt too much to walk. She felt better a few hours later and was up and walking. It breaks my heart to see her like this.
On Saturday all three saw the eye DR. No glasses for anyone. Sarina and Breanna have curved eye nerves. We have to keep an eye on this, but so far nothing to worry about.
I am much better, knee is doing great, Healing well and pain is going down a lot.
Don't forget to sign the guest book.
Heather
Tuesday, January 19, 2010
Hello All,
Still dealing with computer issues.....
Sarina was having some bad headaches for over 2 weeks. So the Neurologist did a CAT scan and saw her on Thursday. The scan was fine, but they felt she needed to stay in the hospital.
They did IV's and new medications and she was much better by the time she was allowed to go home. She is feeling good and on a new medication. We will set up the biopsy when we see the DR in March.
I am doing GREAT. I am now walking without a crutch or cane. Still can't go fast or far, but doing well.
Heather
Monday, January 4, 2010
Happy 2010!!!!!
Still having computer issues (GATEWAY SUCKS!!!!!!)
We had a nice New Years Eve. Had some family over to the house.
2010 did not start out too good for Sarina. She lost a friend from Camp Can Do Yesterday. He was 13 and has been dealing with cancer since he was 4.
We see the oncologist on Wed... guess we will talk more about the biopsy and stuff.
I have my knee surgery on Thursday. Getting a little nervous about it, but I am sure it will be fine.
Don't forget to sign the guestbook.
Heather
Monday, December 21, 2009
Hello,
Sorry for the lack of update....computer issues (I HATE GATEWAY)....anyway using a very old and very slow computer till mine is back from Texas.
Hanukah has come and gone. We had a nice holiday. Girls got lots of stuff they loved. There Hugs and Hope box was so FANTASTIC. They are still spending the gift card there generous Hugs and Hope Elves sent them.
On the medical front......
As of this moment the neurologist feels that Breanna does have mitochondrial complex 1 and 4. This is based on the DR examining her and the fact that the DNA swabs have come postive all 4 times. She is on some new medication to help the leg pain.
Sarina will have to have the biopsy to confirm mitochondrial. Her DNA swab has come backed mixed the 4 times they have checked. We are waiting for the live lab to be opened at ST Chris, we hope in April. Sarina is first on the list. Her heart test came back a little high but normal. She is still so tired and in so much pain and still no answers. We see the Onocologist and Rhumetologist on Thursday.
We went to Washington DC to see the Childhood cancer awarness tree. What a moving day. We went on a bus from the horpital. We went with families that have lost children, survivors and children still batteling the disease.
Right now we are snowed in. We received almost 2 feet of snow. I think school will be open tomorrow. Then Wed is the last day before the winter break.
Don't forget to sign the guestbook.
Heather
Tuesday, December 8, 2009
Hello,
Hanukah is almost here.... first night is Friday 12/11 and the girls can't wait.
Sarina is still so tired and shaky feeling. The heart moniter report says everything is normal so I have no idea were to turn.
The doctors feel we need to do the biopsy and see for sure if Sarina has Mitho. Breanna they say has it because all 4 of the DNS swabs cam back 100% postive. Sarina has been not 100% on the DNA swab. We are waiting till the live lab is open at St. Chris to do the biopsy. I really hate to put her through more surgery, but we need to get her better.
We are off to Washington DC on Saturday to see the Childhood Cancer Awarness tree.
I do need knee surgery. I will have it on 1/7/10...not looking forward to it, but the DR said it is not a big deal and I will be up and about in a week or less.
Don't forget to sign the guestbook.
Heather
Tuesday, November 24, 2009
We saw the Heart DR today. Sarina's heart was still fast. The echo was fine, the hole is still there, but still not hurting her. So we went home on a heart moniter. We go back tomorrow to have her un-hooked. Then we wait..... They said it could be a few weeks till we get the results. WAY TOO LONG...but we have no choice.
Happy Thanksgiving to all.
Heather
Thursday, November 19, 2009
All three girls saw Neurology today. Elizabeth is doing great, nothing changed with her. Breanna is also well for the most points. The Dr says that he does feel she has mitochondrial and started her on some medication for that. Sarina is stilling having the fast heart beat so we will see the heart DR on Tuesday. He is unsure if she has mitochondrial and feels a biopsy will have to be done. The only question is do we have it done here at St. Chris which sends out the biopsy frozen and there for not as reliable or do we go someplace that have a lab that does it fresh on the spot. The labs are in San Diego, GA and Chicago. So some of the Doctors will talk and see what we can do and get back to us. The Neurologist did start Sarina off on the mitochondrial medication as well.
They did another swab on all three girls for the mitochondrial issues, but we know since this is such a new test we can't see the results as being reliable.
Heather
Tuesday, November 17, 2009
So we saw Endo today for all three girls. They are doing OK. Elizabeth was fine, we changed nothing. Breanna is still up and down with her blood sugars and we changed around some of her insulin. She grew 2 CM, not enough for me since she is on the growth hormone. The Dr said to give it more time before we decided it is not doing anything for her. Sarina is OK she lost weight and had to have her insulin changed.
Sarina was having a racing heart so the DR called oncology and they told us to go right over to them. They hooked Sarina up to fluids and we waited. Her heart beat became normal, all her blood work was fine. Then she got up and walked a little bit and her heart beat became fast again. We have no idea what to do with her. We see Neuro on Thursday. The oncologist wants to talk to neuro and see what they think. We want to see if Sarina really has Mito and that is the cause of the racing heart.
Heather
Thursday, November 12, 2009
Breanna is much better. The swap did come back postive for the Swine Flu, but we already know that. Thankfully no one else seems to have it.
Sarina is again ahving weight issue, she lost more weight. We see Endo and Neuro, for all three girls next week.
Sarina and Elizabeth want to Thank You all for the b-day wishes. We will celebrate with the family on Sunday.
Heather
Saturday, November 7, 2009
Hello,
Well Breanna has be hit with the swine flu. Had some very high fevers. We started her on some medication yesterday and she seems a little better.
Tomorrow Sarina and Elizabeth become (gasp) teenagers. They turn 13 and can't wait. Due to Breanna being sick we had to cancel the family party for tomorrow. We will do it next weekend.
Don't forget to sign the guestbook.
Heather
Monday, October 26, 2009
Hello,
We have been so busy here.
10/17/09----The big day for Sarina and Elizabeth. They had their B'nai Mitzvah. They did FANTASTIC. Everything went great. We had tons of rain, but it went off without any issues.
10/24/09 The Light The Night Walk..... It poured and poured and poured. We went out in between the drops and did what we could. Thanks to all that donated.
I will have pictures up soon.
Heather
Tuesday, October 13, 2009
Can't believe it is Oct....
The Phillies WON!!!!!! I smell another world series.
Breanna turned 8. Here are some pictures of her b-day.
On Saturday Sarina and Elizabeth will be B'nai Mitzvah. They have worked very, very hard for this. We are very proud of them. We only hope for good health.
Sarina has missed a lot of school already. She is so tired so ofter, we just don't know what to do.
We see Neurology and other DR end of Oct and November.
Please sign the guestbook.
Heather
Friday, September 25, 2009
We had a nice Rosh Hashanah.
Here are the girls on the first night.
Here is the second night.
Sarina is going to school when she can. It is hard for her and she gets tired so quickly.
We are all batteling colds right now.
To all that fast this Sunday into Monday...May it be an easy fast.
Heather
Tuesday, September 8, 2009
Hello all,
Today was the first day of school.
The girls did well, Sarina even made it through the whole day.
Heather
Sunday, August 30, 2009
We are home. We had a FANTASTIC time at Camp Sunshine in Maine. It was a great week and we all loved it all. Hope this works....here is a link to the photos of our time at camp...http://photos1.walmart.com/thumbnailshare/AlbumID=1300330001/a=3142461/ You might have to cut and paste, not very good at adding links.
The volunteers at camp are the best people in the world. They are a big help and we made many friends. Breanna made a wish on her wish boat that her counselor could come home with her.
We have a busy week here. Breanna did get approved for growth hormones, she doesn't want to take them. We have to set up a meeting with the nurse from the growth hormone company to learn how to do it. Elizabeth has her growth hormone test on Thursday. Sarina sees her Rheumatologist on Friday. We also have a Phillies game on Tuesday. Sarina and Elizabeth are busy studding for their B'nai Mitzvah.
We are also in the middle of fundraising for The Light The Night Walk. School starts the day after labor day.
Don't forget to sign the guest book.
Heather
Tuesday, August 25, 2009
WE ARE IN MAINE!!!!
Having lots of fun here at Camp Sunshine.
We have met up with some old friends and are making lots of new friends.
Breanna is on new medication and having some side effects. Waiting for the DR to call me back.
Heather
Tuesday, August 18, 2009
Hello,
Sarina went and came back from Camp Can Do. She had a fantastic time.
Breanna had a change in her seizure medication. The new medication was not good for her and gave her a bad rash. So now we will try another medication.
As far as the mitochondrial testing goes..... I am confussed with it all. We have tested all 3 girls 3 times with this new DNA test. All I found out was the test is too new to mean anything. 1st test all three girls do have a mitochondrial disease. 2nd test Breanna has it Sarina might have it and Elizabeth tested in the low norm. 3rd test, Breanna still has it, Sarina is now in the low norm and Elizabeth is fine.... Only true way to know is a biopsy. The DR wants to wait because knowing if they do have it will make no differance since there is no cure. He will treat Breanna from now on like she has it. Not sure I like this plan.
We see oncology on Thursday and see what he says about all of this.
Sarina is done PT. We can do everything she needs at home so I can save a trip to the hospital. Might need a small leg brace that fits i her shoes. Need to talk to ortho.
We leave for Maine and " Camp Sunshine" on Sunday. We can't wait.
Don't forget to sign the guest book.
Heather
Sunday, August 2, 2009
Sorry I have not updated in a bit, been crazy here.
Sarina and Elizabeth went and came back from Camp Simcha. They had a FANTASTIC time.
Breanna had her sedation MRI, she did great, had some small breathing problems after, but was good as new two days later. We took the girls to see The Jonas Brothers in concert. Breanna was not up to par due to the sedation still being in her body. Also the concert lights gave her a small seizure. She did enjoy herself anyway. Elizabeth LOVED it, Sarina is not too big a fan.
Still waiting for test results, I just love to wait. Breanna was put on a new seizure medication, but was allergic, caused a rash. So I am waiting to see what the DR will do now.
Sarina went to a Star Trek convention yesterday. She had a blast and got to meet someone form the show Enterprise. She was in awe, very star struck and he was very sweet. Will share pictures when I download. Today Sarina was off to Camp Can Do (American Cancer Society), She will be back on Saturday.
Heather
Thursday, July 9, 2009
Hello,
Sarina is so into this show "Cake Boss", she wrote the main guy Buddy a letter. She wants to be a cake artist like him. Well he signed her GB and she was just so happy.
Well we saw neurology and repeated the tests. Hope to know something in 2 weeks. We changed Elizabeth's migraine medication and hope to chane Breanna's seizure medication. Everything else is going well. I did see the eye dr and the special contacts are helping with the pain they think the vision lost will never get better. We will wait and see.
We had a nice Fourth of July. We had family over for a barbcue. Here are some pictures.
Sarina and Elizabeth left yesterday for Camp Simcha. They will be away for 13 days. They could not wait to go to camp. Breanna is planning to do lots as a single child.
Please sign the guestbook.
Heather
Thursday, June 18, 2009
Hello,
Well the neurologist got back to me today. The test came back that all three girls have Mitochondrial Disease. This test is not 100 they will repeat it on July 1. I am not sure if it is positive again they will still need to do a muscle biopsy on the girls or they will be able at that point to just say they have Mitochondrial Disease. I have no idea what this really means. We will talk to the neurologist on July 1st and I hope no more.
As far as I go...... my sister was able to talk to the person she works for who is an ped eye DR. The DR looked at my records and agreed that surgery is not for me. The damage in the eye is too deep. She did find me a DR that can do the special contact so I will make an appointment with him.
Heather
Wednesday, June 17, 2009
Sorry, but I have to vent. I am going a little crazy here........ We are still waiting to hear about the results on Mitochondrial Disease from the neurologist. He has yet to call me back and I am getting very upset.
Sarina saw the surgeon and had her g-tube replaced and extra tissue burned off. She also saw the oncologist. She grew a little and lost a little weight. She is still having back and knee pain and we have no idea why. She is also bruising easy. So we switch one of her medications and we see if that helps. If she is still bruising we will do some blood work. The pain and bruising could be from Mitochondrial Disease, but the neurologist never got back to the oncologist about test results.
We are still waiting to set up Breanna's MRI, they might get to her in July. We will have to see.
Now onto me. I have been having some eye issues. So after trying medications I went to see a cornea specialist the other day. My eye DR wants me to have surgery. Well the specialist does not think I am a good candidate at this time. I am trying lost of medication in the eye and am trying to set up having a contact that wraps around the cornea. I have yet to find a DR near me that does it. So my left eye is 20/20 and my right eye at best is 20/60, and now I wait to see if we can help get it better.
Heather
Sunday, May 31, 2009
Hello All,
We went to See The Star Trek exbit at The Franklin, it was GREAT. They did not let you take pictures, I was not happy. I did buy some of the ones they took. I added Sarina in the Captain chair.
We are OK for the most part. Still testing to see what is up with the girls. May know something in about three weeks, I just love the waiting.
Breanna will have a brain MRI soon and then start growth hormone thearpy.
Heather
Monday, May 11, 2009 ,
Hello,
Sarina's brain MRI was normal. All of the blood work was normal. Her urine was not normal and showed high levels of organic acid. We will repeat the test and see. This could be for a few reason and we are not jumping to anything yet. Next step for the Mitochondrial diseases testing is a buckle swab. We will do this on all three girls in about 2 weeks.
Breanna has Growth Hormone deficiency. Her levels were very low. We will do a brain MRI soon and then talk about growth hormone replacement.
All three girls have their dance show this week. Practice is Wednesday and the show is Friday and Saturday.
Heather
Monday, May 4, 2009
Hello All,
We have been busy here. Sarina gained some weight and is doing well. We saw the oncologist who is happy with everything. We see him again in June. Sarina has a brain MRI tomorrow.
Breanna lost a tooth and we are waiting (still) for her growth hormone tests.
Elizabeth is doing well.
Heather
Sunday, April 5, 2009
Sorry for the lack of update, but Caringbridge changed there site and I have issues logging in.
The girls did GREAT in school. We are very proud of all three girls.
All three girls saw End.Sarina put on some weight, yes I said PUT ON some weight. She also grow almost an inch. She is doing well over all.
Elizabeth is also doing well and gained and grew. Her bone age test is a little off and the DR said depending on Breanna's Growth Hormone test we might do the same for Elizabeth.
Breanna did not gain or grow. Her second part of the growth hormone test was Tuesday so now we will see. Her diabetes is all over the place and the fact that her seizures are still not in control is not helping. We are again playing with the insulin. She is still refusing the insulin pump.
Sarina saw GI on Monday and they are very happy with everything. All three girls saw the Mitochondrial specialist. Well he thinks it is worth doing more tests on the girls. We did some blood work and we will wait. Sarina needs to have a brain MRI. After all the results are in we will see if a muscle biopsy is needed.
Sarina will is being honored by the Leukemia and Lymphoma Society as Girl Of The Year. They have a contest to see the Man or Woman of the year. They pick two children to be the honorary Girl or Boy of the year during the contest. Here are pictures of the lick-off party.
Passover starts on Wed night.
Heather
Monday, March 23, 2009
Well we were hit with the stomach bug bad here. Finally we are all back on solid food and feeling almost normal.
Sarina is on some new medication and it seems to be helping. All three go for blood work today and see Endo tomorrow.
Next week Sarina will see GI and Breanna goes for the second part of her Growth Hormone test.
Our van dies two weeks ago and we got a new old one. The girls love it and Breanna calls it "Champ". Anything is better than our almost 14 year old beat up van.
We might need to switch peds and I am having a little stress over this.
Please sign the guest book.
Heather
Wednesday, February 25, 2009
Hello all,
I will have to add some new pictures.
Been very busy here. Sarina is dealing with a bad cold and cough. Lots of breathing treatments for her.
Breanna had the 1st part of the Growth hormone test. The second part is next week.
Will update more soon.
Heather
Wednesday, February 4, 2009
Hello All,
I had a nice b-day yesterday. The girls got me some nice gifts.
Today we had no school due to the snow.
Sarina is doing OK, she has been able to go to school a little. The cold does cause her some leg pain.
We have no DR app. in Febuary, just PT.
Breanna will have to have a growth hormone test done soon.
Please sign the guestbook.
Heather
Sunday, January 18, 2009
Hello,
No real news to report on here. We are still waiting to hear about the blood work on Sarina. She did make it to one day of school this week.
We are very sad that the Eagles lost, next year we will make it to the Super Bowl.
Heather
Monday, January 12, 2009
Hello,
Sorry for lack of update.....
We had a nice New Years. School is back, Sarina is still on homebound. We did some blood work to find out about Mitochordial Disease and will do more tests on Tuesday.
Please sign the guestbook.
Heather
Saturday, December 20, 2008
Hello All,
Happy Hanukah, girls can't wait till tomorrow.
Good news here.....100% clear PET scan. No cancer at all. YEA!!!!! We saw ortho and oncology today and they are very concerned with her other issues. Oncology is going to talk to all the Doctors she sees at St Chris and see what they think. He wants to do some more blood work and seriously look into Mitochondrial Disease. I have tried to get a hold of Sarina's neurologist at CHOP, but nothing from them. The thing is that the only real test for this is a muscle biopsy, not something we want to jump into. So we wait some more.
Now on the school front, all three girls made honor roll another big YEA!!!!!!
We went to the Flyers game today with Starlight. The Flyers won big time....6-1. It was a good game.
Here are some pictures.
Don't forget to sign the guestbook.
Heather
Saturday, December 13, 2008
Saw the diabetes DR Thursday. Here is the run down on the girls. Sarina is 58 pounds and 4 feet 2 inches. Her blood sugars were great. Her thyroid is still off. Elizabeth is 88 pounds and 4 feet 5 inches. Her blood sugars are also good. Breanna is 40 pounds and 3 feet 5 inches. Her blood sugars are better than before, but we are still working on that.
Her concerns with the girls is they are so short and Breanna and Sarina have had a lack of growth. She wants Elizabeth to have a bone age test done so she can predict her adult height. She feels Sarina will be around 4'9 to 5'. She wants to do growth hormones, but we need to see what the PET scan shows and what the oncologist thinks. I am personally on the fence about the whole growth hormone issue. Breanna she feels will be a max of 4'6. She wants her to have a growth hormone tests and then we will talk.
Then the DR threw a big curve ball. She wants to talk to the neurologist and have them tested for Mitochondrial Disease. This is not something we want them to have at all. I will call the doctors and see what they think.
Sarina had the PET scan yesterday. Two oncology nurses tried to get an IV in her and then we took her down to the ER to have one of them do it. So 8 sticks later she had her IV and we were off to the other hospital for the PET. After we got there they told us they no longer do kids. They said the other children's hospital now has a PET so all the kids go there. No one said anything when this was set up almost a month ago.
We had to wait for them to see how much of a dose of dye they had to give her. Meanwhile she is with out food since 8 PM so she is hungry and her sugar is going low. They finally did the test and then said they no longer give CD's of the test like the DR asked for. We can come back Monday and request them. This hospital is downtown and a hike. I called the oncologist when I got back and they said they would take care of it. Now we wait till Wed.
Hanukah starts on Dec 21 and the girls can't wait.
Please sign the guestbook.
Heather
Monday, December 8, 2008
Hello all,
Chanukah is almost here and the girls can't wait at all.
We went to Washington DC over the weekend. VERY COLD!!!!! We had a blast, loved the Wax Museum, Breanna thought it was freaky. We saw the Candle lighters Childhood cancer tree being lit of. Beautiful and very emotional.
Sarina is still under the weather. We see Endo on Thursday. Sarina has her PET Scan (pray for a clear scan) on Friday. We see ortho and oncology the following week.
THANK YOU to Hugs and Hope and the family that sponsored the girls. We got the boxes and they LOVED it all. We could not wait till Chanukah and they can't wait to start all the cool craft stuff.
Please sign the guest book.
Heather
Sunday, November 30, 2008
Well,
Sarina and Elizabeth are now 12, where did the time go.
Sarina is still mostly on homebound. We see GI on Tuesday and hope for some help. She also has a PET scan on Dec. 12.
Breanna is doing OK, still having issues with blood sugars. Seeing about getting a pump for her.
Elizabeth is doing great and likes school.
On the FANTASTIC note, Sarina had a poem picked to be published in "Chicken Soup for The Cancer Patients Soul", it will come out sometimes in March.
Heather
Tuesday, November 4, 2008
I updated last week and guess I did something wrong, because it never made it to the page.
We had a GREAT Philiies win here....YEA!!!!!
We have a nice Halloween. It was a nice day and a good time.
Sarina has actually made it to school two times for the whole day. We are hoping this is the start of something good. The cold is making her joints hurt a lot.
Sarina and Elizabeth turn 12 on Saturday. We will have a family party at the house.
Heather
Tuesday, October 14, 2008
Hello all,
The new picture is from Flashes Of Hope. It is an organization that does professional photos of cancer children.
They came to Camp Can Do and pjotographed the kids. We just got the pictures and they are all GREAT.
I will start with Elizabeth. She is healing from the mole removal surgery. The pathology is back and it is nothing more than a mole, YEA!!! The stitches are still in, but she is healing nicely.
On to Sarina.... Still unable to attend school. We saw the neurologist last Wed and we all owe Aunt Jodi a dinner, because she was right. The article she found on Abdominal Migraines is Sarina. The neurologist never got the records from GI, can you hear me yelling about that one, but after listen to the history and symptoms he feels she does have this. So we started her on migraine medication. She has had two attacks and the medication has helped both times. Friday we saw Rheumatology, and the blood work was good. He thinks it is an arthritic issue dealing with her muscles. So we are putting her on a muscle relaxant and we will see. She lost more weight and yet GI is still not concerned. We see oncology on Monday and hope he can help with the weight loss issues.
We had Yom Kippur on Thursday and it was beautiful weather. Breanna and Elizabeth had the great honor of opening the ark (that is were the torahs are) and all three girls had an Aliyah and were called up to read the prayers before and after reading the torah.
Sarina is still down some weight and now on so many medications. The oncologist drew blood on Monday and unless something jumps out they will set up a sleep study and a PET scan for November.
The Light The Night walk is this Saturday and we raised over two thousand dollars so far, it is not too late to make a donation.
Heather
Monday, October 6, 2008 3:42 PM CDT
Hello,
Sorry that it has been some time. We had a very nice Rosh Hashannah. We spent it with lots of family.
Elizabeth had a mole removed on Wed and she is still sore. They did a few stiches. We will have the results from the mole next week.
Breanna had her b-day party on Saturday.It was somuch fun.I can't beleve that she will be seven on Wed.
Sarina made it to school today. She is doing better. She will see the neurologist on Wed.
Don't forget to sign the guestbook.
Heather
Thursday, September 25, 2008
After tons of calls the results of the biopsies are normal. The GI DR is away, but the nurse thinks that Sarina might have these issues beacsue she doesn't want to go to school. Lets start with the fact that the throwing up started in teh summer, that she throws up on the weekends and now has the runs.
So they are finally putting her on the medicine the oncologist wanted to put her on three weeks ago. Also my sister found an article that has a thing that we think is all of Sarina's issues. So we are seeing an neurologist in Oct to check that out.
The school has started the paperwork to get her on homebound.
Heather
Saturday, September 20, 2008
Hello,
Sarina had her scope on Wed. It went well. The Dr saw nothing, but did biopsies and we should know the results Mon. or Tues. The oncologist gave her something stronger for the joint pain.
We are hoping that Sarina can try to go to school on Monday. She is still throwing up, but she can't keep missing school, so we will see.
Heather
Monday, September 15, 2008
Well, Sarina only made it the first two days of school. The throwing up got worth. We saw the rheumatologist and he ran a tone of blood work. Sarina was in the ER on Wed night due to bad stomach pain. At the time they said she had a UTI, but that was wrong. We also found out she was impacted, so she had three days of clean out.
Today we saw GI and they changed her medication and will do an endoscope on Wed, wish us luck.
Elizabeth saw the surgeon today. The mole can be removed in office and they will do that Oct 1st.
Heather
Thursday, September 4, 2008
Today was the 1st day of school. Breanna had a good time. Sarina and Elizabeth said school sucked. So of it is that this is a new school with new faces and new rules. Sarina said she was unhappy and wanted to transfer out. She throw up during lunch and no one seemed to notice. Hope tomorrow is a better day. Here are some pictures I took before they left.
Quick update on the girls.
S & E saw the ped on Saturday. Sarina lost some weight. Elizabeth is doing well except she has a mole under her arm that the DR thinks should be removed and checked. We see the surgeon on the 15th.
Yesterday all three girls saw Endo. S (5.5 AIC) & E (5.6 AIC) are in good diabetic control. The Dr is worried about Sarina's weight loss and pain. Her bone age test came back over 2 years delayed which means she has time to grow. Breanna (9.2 AIC) is not doing well at all. We played with her insulin doses and will see how the school is about giving shots at lunch. We can't let her go too low because last week she had 2 seizures.
Today Sarina saw ortho and he says that she will have to live with the pain and maybe outgrow the hip and knee issue, it is a chemo side affect. Not happy with the answer. We see the rheumatology next week since everything thinks this might be arthritis.
Sarina passed the swallow study so they have no idea why she is throwing up. We are going to try smaller meals at more times a day and see if that helps.
All three girls start school today. Had a meeting with Breanna's teacher and new nurse. I think it will be a good year for her. S & E after much too do I think the school is up to date on all there needs and accommodations. We will wait and see.
Heather
Saturday, August 30, 2008
Hello,
We are back from Camp Sunshine in Maine. We had such a GREAT time. We met some old friends and made lots of new friends. This year all three girls had FANTASTIC one on one's. We could not have asked for a better time or better people to be with.
Medically we are at a stand still with some things. Sarina is still trowing up and in lots of pain. She did a swallow test yesterday and it was normal. After the test she went into the bathroom and threw up. So now we wait to see what is next.
Tomorrow we are off to Great Adventure with Chai Lifeline. Monday is cousin Tommy's third birthday party. Tuesday all three girls see endo. Wedensday Sarina will see Ortho. And on Thursday they all start school.
Heather
Don't forget to sign the guest book.
Thursday, August 21, 2008
On Saturday we went to Dutch Wonderland with the tickets Sarina won. We had a great time.
We have been busy this week. Sarina saw GI on Monday, she is doing well in the weight dept., but for over two weeks now she throws up lunch. So we will do a swallow test and see what is going on. We are going to reduce her night time feeds and see how she does.
Then on Tuesday everyone had blood work and Sarina had PT. The therapist is concern with Sarina's leg, hip and back pain. We are again tapping up the knee sine the leg braces are too painful for her to wear. The therapist called the oncologist.
So today we saw the oncologist. He thinks the pain is due to her left hip over extending itself and her knees going inward. So they set up an app. with ortho. We also want to rule out arthritis so we are going to see rheumatology as well. We got the results of the lung test. It was not as bad as we thought. She will know need a breathing treatment twice a day forever and a fast action inhale as needed.
Yesterday we went to the Phillies game. We had a good time and even made it to the end of the game. We won!!!!!
We leave for Camp Sunshine in Maine on Sunday so I am busy packing.
Heather
Wednesday, August 13, 2008
Hello All,
Sorry been a bit. Summer seems to be so busy and I never get a free minute.
So Sarina went and came back from Camp Can Do, she had a blast. Saw some friends she only sees at camp. Made some new friends.
We have a few more things to do this summer before school starts on Sept. 4th. We want to get to Dutch Wonderland and we have Camp Sunshine in Maine the week of Aug 24.
Sarina will repeat her lung function test on Friday. She failed her last one so we will see.
Heather
Friday, July 25, 2008
Quick update..
Sarina and Elizabeth are home from Camp Simcha and had a BLAST.
Sarina saw the oncologist and all is well. We have a few test next week.
We are off to Dorney park with St. Chris tomorrow. I am sure we will have a ton of fun as long as we don't melt in the heat.
Heather
Wednesday, July 16, 2008
Sarina and Elizabeth are home from camp.
They had a FANTASTIC time, but are tired.
Today Breanna sees neurology and Thursday Sarina sees Oncologist.
Heather
Thursday, July 10, 2008
Hello,
Sarina and Elizabeth have called from camp and are having a FANTASTIC time. They come home Monday and I can't wait.
Breanna has been missing her sisters, but we are keeping her busy. On Saturday we went to the Garden State Discovery Museum...here are some pictures...
Then last night we went with Starlight to the Phillies game. The Phillie Phantic was there and the kids loved it. He threw popcorn at Breanna and she thought that was cool. We did have a rain delay, but the game got in and we won 3-2 thanks to a home run by Breanna's favorite Phillie Ryan Howard. Her are some pictures....
Heather
Thursday, July 3, 2008
Hello,
Happy July 4th to all.
We have been so busy here. We wemt to the beach for a week and had a blast.
Sarina and Elizabeth left for Camp Simcha for 2 whole weeks.
Breanna is doing well and having lots of fun being an only child, but a little loney.
Heather
Tuesday, June 17, 2008
Hello,
Sarina has been sick for three weeks almost now. She lost more weight and has been having some breathing issues. So after we saw Ortho today we ran upstairs to Oncology. Turns out she has bronchitis. So she is doing breathing treatments ever 3 hours and we will see. She will go back for a lung check on Friday. Hope she is up to graduation on Thursday and we leave for the beach next Monday.
Ortho on the other hand is very happy with the way she is healing. Her spine looks great. We are still waiting on the new leg braces and the DR also wants a knee brace. The back pain is from were the cancer was in the spine and she has to deal with it. He said he could put her on stronger pain medication, but she said she is OK, she does not like the other medication because it makes it hard to think. He said that we just have to hope that over time the bones fills up from were the cancer was.
Today was Breanna's move-up day. She did a great job singing and is now all ready for 1st grade.
Heather
Friday, June 13, 2008
Sorry it has been so long since I updated. I had tons of computer issues.
The girls are doing OK. Breanna is doing well the heat makes her sugar drop very low, but we are dealing.
Elizabeth went to the ACS camp can do for siblings last weekend for 4 days. She came back Tuesday. She had a blast, but is very tired. She also had a bad reaction to something from camp, the Dr thinks a bug bite. I though she had the chicken poxs. She is on the mend.
Sarina has been sick for two weeks. The strp test was neg and we are waiting for the urnie cultures. At the DR office they did say they saw blood and WBC in the urine and think she has a bad UTI. We will see.
Please sign the guestbook.
Have a great weekend and Father's Day.
Heather
Wednesday, May 21, 2008
Hello all,
We have been so busy here. Sarina lost some more weight so we are putting her on some new medication in hopes to get her to eat more. So far all it is doing is making her tired.
We had the dance show and all three girls did FANTASTIC.
Here are some pictures of Sarina.
Here are some of Elizabeth.
And of Breanna.
Please sign the guest book.
Heather
Sunday, May 11, 2008
I hope everyone had a nice Mother's Day. We had a nice time with the whole family.
Sarina is doing well overall. We had a small scare last week. She has tons of bruises and the PT was worried so we went right up to oncology for blood work. All was normal. It turns out she is just falling a lot.
So ortho looked at her. She is healing nicely from the surgery. Did x-rays because of knee pain, and foot turning in and discovered she has patellofemoral syndrome. It is an issue with the knee cap. So we are chaning her PT a little and they ordered leg braces. This time I think they will be only in the shoes and not come up much at all. We will see him in 6 weeks to see if this helps.
Heather
Tuesday, April 22, 2008
Been busy here. We went to the circus last week and had a great time. Breanna was not feeling 100% so she would not see the clowns before the show.
We are now in the holiday of Passover. We had two nice seders. The weather was so nice.
Here are the girls on the 1st night.
And on the second night.
We have to up Breanna's seizure medication because she has had a few in the last few weeks. Sarina is healing well, we see the ortho DR in May.
Happy Passover to all.
Heather
Thursday, April 10, 2008
Hello All,
First I have to say "THE FLYERS ARE OFF TO THE PLAYOFFS!!!!" Ok and we all know the sixers are next, yea Philly!!!! We have tickets to the sixers tomorrow and can't wait.
Ok now for what you all come her for the girls update.....
Sarina saw the oncologist today, did not gain or lose weight. We will have a meeting with him, GI and endo end of May or early June to talk about her. His goal is to start her on medication to make her eat and stop the tube feeds. He would like the G-tube gone by the start of school. Of course he did not have the pathology report, he was actually never told about the tumor, love the way doctors talk to each other.
The hospital is having an art show next week and all three girls are in it, very cool.
Have a good weekend.
Heather
Sunday, March 30, 2008
Hello,
Sarina is doing well. Still in pain, but getting around. The DR went well over all. She is healing well, see him again in 6 weeks. We did to our shock find out that they removed a tumor by the tailbone. The Dr said it was not cancer, but could have been helping with the pain. This type of tumor is not found in this area, but you know that Sarina has to be different.
She tried school on Thursday, but it was too much. We will try again on Monday because they are having testing and this helps decides were to place them in 6 grade.
All three girls are in the 1st ever art show for the CBC at the hospital. The CBC helps with parties at the hospital, gifts for the kids, trip to Dorney park and the pumpkin patch. It is on April 17th and we can't wait.
Heather
Monday, March 24, 2008
Hello,
For all the celebrate Easter I hope you had a wonderful day.
Sarina is doing a lot better and able to move better. Still in some pain, but doing great. We see the DR on Wed. and then we will see if she can go back to school.
Elizabeth will have some tests on Tuesday at the hospital to see why she is having stomach and back pain. Never a dull moment here.
HEather
Thursday, March 20, 2008
Quick update here. Sarina is almost a week from her surgery and doing well. Still in so much pain, nights are the hardest on her. She is starting to ge around and doing better every day.
Tonight is Purim and all three are not happy that we are going to miss Purim services, they love to dress up and go. The thing is Sarina is not ready and Breanna is also under the weather so I don't see how we can go. Next year we will make it.
Please sign the guestbook.
Heather
Sunday, March 16, 2008
Hello,
Sarina's surgery went great. They were able to remove the deformed piece of the tail bone only and also to close up the dimple on the outside of the spine. They said that it was a birth defect that caused the end of the tail bone to come to a point and flare out. They were also able to do this with a small incision, only 7 stitches needed. Yesterday she was in so much pain, but woke up better. She even walked some so they let us come home.
She is doing better than I thought she would. She is so brave and such a trooper. She is on some strong pain medications and can only lie on her side, but is doing good considering it all.
On a GREAT note both Sarina and Elizabeth made honor roll and Breanna they would like to test for the mentally gifted program next year.
Heather
Monday, March 10, 2008
We had a VERY busy weekend. On Friday Sarina and Elizabeth had a class trip to the Zoo. It was nice, but very cold. Then at night we went to see the Sixers play. We won the game and had a good time. The only problem was it was pouring so we got soak going into and out of the game. 
Then on Saturday we went to see the Harlem Globetrotters. Again had lots of fun could have been better if we did have the downpour. 
Going home we saw a rainbow.
We are all set for Friday I think. Sarina is very nervous and I understand.
Heather
P.S. Please sign guest book The Girls love to read all the nice messages.
Tuesday, March 4, 2008
Hello,
Well we have a date. March 14 will be the surgery. Today she had a CAT scan and unless it shows something they did not expect it is all set for the 14th. Glad to have the ball rolling on this. Sarina is very nervous about it all.
On the bright side the hospital got us tickets to see the the Philadelphia 76ers on Friday and The Harlem
Globetrotters on Saturday. So it will be a basketball weekend.
Heather
Monday, February 25, 2008
Quick update to say we are all hanging in there. After we all took turns with the stomach bug we are doing better.
Brian started a new job today so there are some changes we have to deal with.
Sarina will be having lower back surgery very soon. It will be a 4 to 6 week recovery. The good thing is only a day or two in the hospital.
Heather
Saturday, February 2, 2008
Sorry for no update I did not have much time lately. My Mom is doing well from her surgeries and should be home tomorrow. We have been busy here with lots of things.
All three girls saw the endo this week, Everyone is doing well. We might have to change Breanna insulin type yet again since she is having too many highs and lows. Sarina lost more weight, she is down now 4 pounds. Wed at sometime during the night Sarina's G-tube came out. When she woke up it was gone. We rushed her to the ER, they were afraid the hole was too closed and might have to operate, but thankfully they were able to slowly open the whole in the ER and pop in a new one.
Next week is also busy, Sarina see's GI on Wed to see about the weight loss and Surgery on Thursday to see if the tailbone has to be operated on or not.
Heather
Please sign the guest book the girls love to read the hello's.
Thursday, January 10, 2008
Quick update on Sarina and Breanna.
Sarina will have to see the surgeon about the thing growing from the dimple on her spine. The oncologist disagree with what it is, but we do know it is not a tumor. So we see a surgeon on the 14th and will go from there. She also gained a little over a half a pound.
Breanna saw the new neurologist yesterday. We like him a lot. She had an EEG that showed some activity in the back of the brain caused by flashing lights. It was not a full blown seizure. After looking at everything he thinks she does have Epilepsy after all. He thinks it was caused by a brain injury at birth and there is a good chance as she grows that the circuits in the brain that misfire now will be bypassed with new cell growth and the seizure will stop. So she is back on seizure medicine and we will see.
Heather
Monday, January 7, 2008
Hello,
Quick update.....Sarina is doing OK, the fevers are gone. She did gain about a half a pound. It looks like the thing on her dimple at the base of the spine will have to be surgically removed after all. We are not sure if general or neurosurgery will do it. The oncologist will talk to them and lets us know who has to do it.
Breanna has an appointment at CHOP with the new neurology on Wed, wish us luck. She hates to have the EEG's.
Heather
Friday, December 28, 2007
Hello All,
We are all doing well here. Hope you all had a good holiday and you all will have a healthy and happy 2008.
We have no plans for New Years, just stay home, have some popcorn and watch lots of movies.
Heather
Friday, December 21, 2007
Sorry been a bit since I updated. My Mom had surgery on Dec 10 and wound up in the hospital for a week. She will ahve two more soon. I can't go into details since the girls read the journal, but some prayers would be nice.
Sarina's PET scan was clear.............YEA!!!!!!!!!!!!!
Why is she having fevers, we don't know but we know it isn't the worse case seniro. We see oncology on Jan 6 to talk about it in details.
We had a good Hanukah and the girls got tons. Thank you Hugs and Hope folks, you are soooooooo sweet.
To top things off the Jonas Brothers thanks to a friend of a friend sent a signed photos to the girls. My ears are still ringing from the screaming.
Hope you all have a great holiday season.
Heather
Wednesday, November 21, 2007
Happy Thanksgiving to everyone.
Sarina is still running a fever every night no idea why. She is still having lots of back and leg pain they think it is the cold, damp weather.
We went to the Flyers game on Saturday we lost, but had a good time. Breanna was so funny she was rooting for the puck. Here are some pictures.
Heather
Tuesday, November 13, 2007
Hello,
I added Halloween and Pumpkin Patch pictures to the photo album......take a look.
Sarina is doing better. Still in some pain, but getting better. Breanna's EEG was normal and then 4 days later she had a 20 minute seizure. The DR is not sure what to do now. We might go to another DR and see what they think.
Well, Sarina and Elizabeth are now 11. they are getting so old. Here they are on there b-day.
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We went to a cool Starlight Starbright event while Breanna was hooked up to the EEG, it took her mind off of it.
Here are some pictures.
We are going to the Flyers game on Saturday with Starlight Starbright. And after Thanksgiving Sarina and Brian are having dinner with some of the Eagles.
Have a great rest of the week.
Heather
Tuesday, October 30, 2007
Sorry been so long since an update. Been so much stress and i just didn't want to vent to you all.
Sarina is still in lots of leg pain and having stomach issues again. Breanna had some more seizures so she will have a three day EEG starting Friday, thankfully it is the one we can do at home and she does not have to stay in the hospital.
I have tons of pictures to post. We did a pumpkon patch, more soccer and Halloween.
We had a bunch of issues at home, all better now. Sink went in bathroom, needed to be replaced. Frig went, could not be fixed need to replace then Brian (hubby) car went too old to fix so we had to get a new/old car.
So now sink and frig are good and hubby is OK with new car.
Thanks for listening. I will upload the pictures soon.
Heather
P.S. anyone have any contacts with the Jonas Brother please let me know.
Wednesday, October 17, 2007
Hello,
Well we have had some ups and downs here.
Last week it turns out Sarina had a leg infection, we caught it early and with some medication she was good as new.
The weekend we went on a camp out with the Oncology Dept. of St. Chris, had a blast. VERY COLD, not a tent person. The kids had a great time, saw lots of old friends and made a few new ones.
The thing Sarina loved the best was the mechanical bull. OK, I know you are now asking yourself why I would let her ride this thing, not once but over a dozen times. It seemed OK at the time and she was having so much fun. I just I forgot and just wanted her to be normal.
So anyway now today after much leg and foot pain since Sunday we go to Ortho. Nothing broken, no more leg infections just a bruised bone and some pulls on ligaments. So Sarina is in a boot like brace for three weeks. No dance or soccer, not a very happy kid right now.
Heather
Friday, October 12, 2007
Sorry been so long since I have updated. Just been busy and having some computer issues.
Breanna turned 6 on Oct 8th. My baby is not a bay anymore.
Sarina had a leg infection that is almost all gone. We caught it early so we were able to treated it at home and no need to go into the hospital.
Today we see the endo and will see what to do with all three girls. Breanna's blood sugar is all over the place. Sarina has also been running high, but I think it is the infection. Elizabeth has been right on target.
Heather
Friday, September 14, 2007
We have been busy here. Sarina and Elizabeth started fifth grade. They like their teacher this year. Breanna will start K on Wed. Here are some pictures of the girls before they went off to school on the first day.
We had a nice Rosh Hashanah. We had a great time with the family and as always Grandma makes a great dinner. Here are some pictures of us yesterday.
I did add some new pictures to the photo album so take a look. Don't forget to sign the guestbook.
Heather
Sunday, September 2, 2007
Hello All,
I want to wish you all a very happy Labor Day. I had updated early last week and somehow it got lost in cyber space.
Lots have happen here. Sarina and Elizabeth left and came back from Camp Simcha. They just love the camp and the people. They had a great time and came back so very tired. Here are some pictures of them leaving for camp and coming home.
Then we went to another Phillies game...We won YEA!!!!!!!!
Sarina saw GI this week. She gained a pound and looks good. We are going to cut back some of her feeds and see if she can keep the weight up on her own. A step towards getting rid of the feeds all together. She also saw oncology and all of her blood work was great. We don't have to see them for a whole four months.
Breanna had a hard few weeks. She had a few seizures and had some trouble with her blood sugar. We change around some medication and she is doing better.
All three girls start soccer next Sunday. Sarina and Elizabeth start school on the 10th and Breanna starts around the 19th.
Heather
Friday, August 10, 2007
Hello,
Sarina came back from camp on Saturday. She had a great time, but was very tired. Here are some pictures.
On Monday we celebrated Grandma's birthday. Had fun with all the family. On Wednesday we went to the Phillies game. We won!!!!!!!!!!!! But it was soooooooooooo hot we were melting in our seats. Here are some pictures of the girls at the game.
We have a very bust weekend planed and then on Wednesday Sarina and Elizabeth are off to Camp Simcha for 13 days.
Kira the dog feel the other day and has been limping. We took her to the vet not broke very bad sprain and had to be popped back in place. A week of rest and if that does not help surgery. She is 14 years old so surgery is not a good option for her so lets hope the rest works.
Heather
Wednesday, August 1, 2007
Hello,
Sarina left on Sunday to the American Cancer Society camp. She went on the bus with a friend that went through a lot of treatments together. They spent a lot of time in the hospital together. This was his first year at camp. She will be home on Saturday. Here are some pictures of her leaving.
Nothing new here, today we are getting the roof fixed. It is too be a hot one for the next few days so we have to keep an eye on Breanna. Her blood sugar drops in the heat.
Heather
Saturday, July 28, 2007
On Tuesday Sarina say the heart DR. Drum Roll Please....................... She does not need now or EVER need the heart surgery. The hole does not pose any threat to her life now and does not pose a threat of a stroke later in her life. The Dr said were the hole was and the size of the hole is the reason, YEA. Not only that he does not need to see her again another YEA!!!!!!!!!!!!!!!!!!!!
Then we saw the oncologist on Thursday and the child caught a very lucky break. The Dr had told her before we went to Camp Sunshine she had to gain a pound for him to let her go to Camp Can Do for the week. Well she is still saying her throat hurts and now has a cough so she is still not eating much. So she lost some more and did not gain.
So for her lucky break she did not see the DR she usually sees she saw another oncologist and she did not know the weight rule for camp. She said that she just has a small virus and can go to camp. They will see her back in a month to see how she is feeling and if she is doing better on her weight.
I also mentioned to the DR about this condition called avascular necrosis that I heard about at Camp Sunshine. It attacks the joints and bones. I was wondering if Sarina had it since she had all that pain and the DR said YES....not happy about that. So far they said it is mild and they just wait and watch.
Oh and on another note Sarina is so very happy the guy that plays "Sylar" in Heroes will be Spock in the New Star Trek Movie. And for you doing the countdown "Heroes is back on the air Sept 24 and the new ST movie comes out X-mas 0f 08.
Heather
Tuesday, July 24, 2007
We are home from MAine. Besides the VERY long car trip home we had a GREAT time at Camp Sunshine. I have tons of pictures, but am having trouble linking them to the page.
Sarina is still sick, now she has a bad cold and very bad cough. She sees the heart dr today and oncologist on thursday. If she is better she leaves on Sunday for the ACS Camp Can Do for the week and she is crossing ever thing that she is up for it.
Heather
Saturday, July 14, 2007
Been a bad week here. Sarina spent a few days in the hospital. She had an infection and ketones in her urine. She also lost weight. She is doing better and if everyone stays well we are off to Maine tomorrow.
Heather
Monday, July 2, 2007 4:05 PM CDT
Hello all,
I have yet to figure out how to set up a link to see the on-line photo album. So it you want to see the beach pictures I guess you will have to cut and paste. They are here http://photos.walmart.com/thumbnailshare/AlbumID=13546175/a=3142461/t_=3142461.
We went to the Phillies game with the Starlight foundations and had a BLAST. 
All three girls see endo tomorrow, wish us luck.
Sarina is having lots of belly pain and nothing seems to help right now. Hope the DR can help us with that soon.
Happy July 4th all.
Heather
Thursday, June 28, 2007
We are back.
We had a blast at the beach. We had so much fun and it was great to have all the cousin there with us. I have tons of pictures to share soon.
Sarina saw GI this week. She lost over a pound and is impacted yet again. We gave her stuff to clean her out, but she threw it up. So now we are trying something else.
More updates to follow.
Heather
Sunday, June 17, 2007
Another busy weeek, sorry no updates.
Elizabeth had a blast at camp. We finished school here.
We are doing Father's Day with the family today and tomorrow we are off to the beach for the week.
Will update more when I get back.
Heather
Monday, June 11, 2007
Hello,
We had a busy weekend here. Saturday Elizabeth left for the American Cancer Society Sibling camp for 4 days. Here she is leaving.
So on Sunday we decided to try out the new Flyer rink at the Garden State Discovery Museum....
Sarina now has a bad cold, but besides that is doing well. We leave for the beach in 6 days and can't wait.......
Heather
Sunday, June 3, 2007
Been one of those weeks of good and bad I guess. First the bad, Elizabeth is officially a diabetic. She started insulin is doing ok on it and with the whole idea. She is so brave. She is on a different kind which is driving me a little crazy.
The good stuff now. Sarina and Elizabeth had there school dance show.
First violin concert
Breanna graduated from pre-school watch out kindergarten.....
and we are finally getting the basement finished.
Elizabeth leaves for the ACS sibling camp on Saturday and can't wait. School only has 2 more weeks and then we are off to Wildwood.
Heather
Monday, May 28, 2007
Hope you all had a good weekend. We had a very nice one. We did a Radio Disney event and then went to see Shrek 3 on Saturday. At the movies they had this promotion set-up and we just had to take a picture.
Today we did a barbecue at Grandma and Grandpa's house with all the cousins. Lots of fun and some great food.
Heather
Saturday, May 26, 2007
Hope everyone has a good holiday weekend. We have fun things planned here. It is very hot almost summer weather.
On Thursday Breanna cut off 11 inches of hair to donate for "Locks Of Love". Here are the pictures.
Heather
Monday, May 21, 2007
Over the weekend the girls had their dance show. They did great and looked wonderful. Here are some pictures.
Heather
Monday, May 14, 2007
Hope you all had a nice Mother's day. We had a nice one spent at Grandma and Grandpa's house.
On Saturday we went to a fund raiser for a local organization called Kisses for Kyle. They help families that are dealing with children that have cancer. Here are some pictures of the girls.
We finally got Sarina's new wheel chair in today. We also got in the mail over the weekend another "Heroes" autograph, Hayden Panettiere who plays Claire the cheerleader. Sarina was very excited.
The girls dance show is Friday and Saturday.
Heather
THursday, May 3, 2007
Yesterday was Brian and I 14 year aqnniversary. We also are sad to say that we lost are cat tribble. She was 13 1/2 years old. The girls are very upset.
Heather
Tuesday, May 1, 2007
Sarina got a wonderful surprise in the mail the other day. A Spinoza Bear. A big teddy bear with a CD player built in. She just loves it Here is Sarina and Spinoza.
On Saturday we went to The Philadelphia Art Museum. Sarina and Elizabeth are doing a project for school. We had a good time. Breanna was a little upset because she thought she would be making art and not just looking at it. A funny by Elizabeth. We saw a lot of European art and a lot of that has topless figures. So about an hour into the tour Elizabeth leans over to me and says ”Didn’t they have bras back then”. Here are some pictures of our visit.
Here are the girls at the Art Museum.
A small rant about insurance companies so bare with me for a minute. First off they denied Sarina a new wheelchair, why because she only has fatigue issues now and can always rest. She is really to big for the one we have. So I have ordered her a new one, man these things cost a fortune, So we will get that soon and Breanna will then get Sarina’s old one. She was also denied an insurance covered chair for the same reason as Sarina.
Lastly we are still fighting to get the girls MODY test paid for. The thing is it will be about two thousand per girl to be tested. So far they say no because it is considered genetic testing.
Heather
Thursday, April 26, 2007
Hello All,
Sorry been a bit since I have posted. Still having some computer issues. We have been busy here. Sarina is doing well. Breanna had three seizures on Saturday and her blood sugar are very high for no reason at all.
On Saturday Sarina went to her Camp Can Do reunion. She had fun, but was so tired after it. Here are some pictures of her leaving.
Also on Saturday Elizabeth and Breanna went to the ACS Kid’s Night Out at The Please Touch Museum. They had so much fun. Here are some pictures of them.
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Tuesday Breanna saw the neurologist and we have yet again upped her medication and hope that helps.
Heather
Thursday, April 19, 2007
Hello all,
Well only goods to report. First we goy another "Heroes" autograph, Adrian Pasdar who plays NATHAN PETRELLI. He wrote her a full page letter and then signed a color photo. She was so excited.
Second Breanna passed her hearing test with flying colors. No need for tubes the last test failure must have been from fluid.
Lastly we went to the circus. We got to see some of the animals and performers before the show, very cool. Here are some pictures.
Saturday Sarina leaves overnight for her Camp Can Do reunion, she is VERY pumped.
Heather
Thursday, April 12, 2007
We saw the oncologist today and the PET scan was clean, YES!!!!!! No signs of anything, doing a happy dance. She did lose a little weight, but no big deal.
And to top it off three flyers were at clinic and they gave her a hat and signed it.
Heather
Tuesday, April 3, 2007
Here are some pictures from our trip to the zoo.
Heather
Monday, April 2, 2007
Saturday we did get to the zoo to say good bye to the elephants. It was a nice day overall. I will post pictures soon.
Today Sarina had her PET/CAT scan. After the original scheduling error all went well. We should have the results next week. I was only home for less than an hour and Breanna had a major seizure and we wound up in the ER. She is fine now they just upped her medications and changed another. We did make it home for a little of the seder.
Heather
Tuesday, March 27, 2007
We did not get to the Zoo over the weekend it did rain. I do hope to get there this weekend. Bobby is coming in from Israel and Uncle David, Aunt Jackie and Jessica will also be in this weekend so I am not sure if we can fit it in. Jessica got accepted to Moore College, it is an art school and she is going to an open house. I would really like her to go to the University Of The Arts, not that I am bias, but it is a good school. The great news is that means she will be moving to Philly in September so we will see her a lot more.
OK, Sarina saw GI and she gained almost a pound in 2 months, YEA. So keep all the same. They decided not to scope her. We did change the G-tube to a slightly bigger one and we see them in June.
The bad news is Breanna and I were in a minor car accident yesterday. Somebody backed into us at the Preschool parking lot. The van got the worst of it. Breanna is fine thankfully I just hurt, but could have been worse. So now I have to see if they will repair the van after all it is over 12 years old. Nothing but action here. Breanna has PT today and will see ortho tomorrow. Sarina and Elizabeth have there model seder at Hebrew school today.
Heather
Friday, March 23, 2007
We are all doing well at the moment. Sarina is doing great using either the knee tape or knee brace. Neither was covered by insurance. I get so angry at what the insurance company says no to I could just scream. But like I said the good news is that she is having little to no pain.
We have the PET scan set up for April 2nd, I am so nervous and yet can't wait for the test and then results. I am sure they will be a clear scan and we can go back to being happily cancer free. March 28 will mark 4 years that Sarina is cancer free now that is something to post about.
Hope everyone has a good weekend. We were to go to the Zoo on Saturday and say good-bye to the elephants, but now it looks like it will rain.
On another nice note the girls got a package for Billy Ray Cyrus fan club. Billy Ray is Hannah Montana's (Miley Cyrus)Dad. They were sent postcards, Billy Ray postcards and Miley postcards. I have three very happy girls. More to add to the collection.
Heather
Wedensday, March 21, 2007
Sarina's hand is fine. The x-ray showed nothing wrong. She is still in a little pain, but the swelling is gone.
We got a knee brace and will try it out tomorrow at school. I also ordered tape to use on the knee. The PT tapes the knee, but it only stays on a few days and insurance does not cover the tape. I had to order it on-line so it shoould be here in a few days. Sarina will then decide which she likes better the tape or the brace.
We are trying to get ready for Passover. I am not too fond of this holiday at all. This will not be a easy holiday at all for us. Papa was the leader of the seder and he will be missed this year.
Monday, March 19, 2007
We are still digging out from the ice storm of Friday. Who would have thought that 3 inches of ice would keep you stuck in the house for so long. On Sunday Sarina hurt her hand, I thought it was OK, but today I am not so sure. I took her over to have it x-rayed so we should know something tomorrow.
We finally set up the PET scan for April 2nd. I can't wait and yet I am so nervous all at the same time.
Heather
Tuesday, March 13, 2007
So we saw the endo today. Man am I so confused now. She thinks all three girls do have type 1 diabetes, but the MODY form. I had never heard of that before in my life. She said since all three tested negative for the antibodies she is leaning towards this MODY form. The thing is to make sure you need to do a genetic test which my insurance company refused, scratching my head here. So we are appealing that one and hope to be able to get the test done soon. In the mean time. Breanna's insulin was upped yet again. Sarina is still on such a little dose I wonder why and Elizabeth is still just being watched and tested three times a day. We did blood work on Sarina and Breanna today. Elizabeth will get her blood work done soon since her has to be done fasting and she had already ate breakfast. So we will wait and see. My girls always have to make things different.
Sarina is doing better now that we have her knee taped a little different which means a knee brace might be the answer for her. On a cool note....Sarina is very into the show Heroes. She wrote to the whole cast asking for autographs. Well one of the cast sent her an autographed picture Masi Oka who plays HIRO NAKAMURA sent her one. He wrote "To Sarina, From one hero to another" she was soooooooooooo excited.
Heather
Heather
Thursday, March 8, 2007
Hello all,
Been a busy week here. Sarina saw the orthopedist on Wednesday. He said she looks good to him. Basically she will have to live with the pain, it is a chemo side affect. We should keep up PT and stretching her out. He does not think leg braces will help her. We might get her a knee brace to keep the knee from popping out.
Breanna had a PT consult on Tuesday. The PT does feel she has CP. Also her right leg is longer than her left and she does have Scoliosis. They want her to see ortho about all of that. She will start PT weekly next week and we have to start stretching her since her hamstrings are very tight.
Next week all three girls see endo.
Heather
Monday, March 5, 2007
We had a busy weekend. Saturday was Purim and we went to services. Here are pictures of the girls before we left for synagogue.
On Sunday we had the Purim carnival. The girls had lots of fun. Here are some pictures of them at the carnival.
Heather
Sunday, February 25, 2007
Finally the neurologist called me on Friday afternoon. Turns out that the increased levels in Breanna's blood work means nothing. She was increased by 15 out of the normal range and they are not concerned unless it is increased by a 1,000. So that was good news. So when I said why does she crawl up the steps, why is she is pain? We will talk about that in June when the next appointment is. OH NO we will not wait till June. So I ask is this due to her CP, should she see an orthopedist?
So the DR that DX her with CP and right side weakness now says that when he say her in November he no longer saw CP or right side weakness so he feels she no longer has CP, WHAT? So I say "Are you taking back your DX?", he thinks so we will talk about it in June. No I told him June was way to long. So he will be out of the office all of March so they set us up for the first appointment in April which was the 24, I took it I mean it is better that June.
So then I take Sarina to PT. Turns out the ER wrapped her foot all wrong. So she talk to her orthopedist and they put a new boot on it and she is feeling and walking much better. We are also back to tapping the knee so it does not pop out. We see ortho on March 7th and will talk about bracing the legs or the knee at that time. I tell the PT about Breanna. She agrees to squeeze her in for an evaluation, thankfully since she is booked up for the next 6 months. So Breanna will see her on March 6th. Anyway the PT says have Breanna walk on her knees if it hurts she does have tight hamstrings and CP. So we have Breanna walk on her knees and guess what.. yep she has pain in her hamstrings.
Sarina has started a writing campaign for autographs. Elizabeth and her are trying to get autographs from the whole cast of “Hannah Montana”, so far they have one, but they really want Miley Cyrus. Sarina has also written to everyone on “Heroes”, this is her new favorite show. So far no one has gotten back to her from that show. So she waits for the mail everyday. Hope soon she gets something.
Sorry for the book, but now you are updated on everything.
Thursday, February 22, 2007
Breanna say the ped about the leg pain and he said he thinks she might have a degenerate muscle disease. He wanted to do blood work and would talk to the neurologist. So they drew blood work.
On this Monday the 19th Sarina feel and we thought she broke her foot. Spent forever in the ER, thankfully only a very bad sprain, they wrapped it and she should try and stay off it for the week.
I took her to the ped the next day and he agreed, but wants her to keep her PT appointment on Friday and see if the PT think we should do anything else. While I am there he said he got back some of Breanna’s blood work and it is off and I need to talk to neurologist they might want to do more test. So I have been calling and leaving messages for the neurologist and have yet to hear back.
Heather
Wedensday, February 14, 2007
Happy Valentines Day to you all.
The funeral was nice on Monday. We have been sitting shiva and seeing lots of faily and friends. We had a bad ice storm last night and school was closed today. Not sure if we will get out today or not.
Heather
Friday, February 9, 2007
The girls are OK.
I write with a heavy heart, Papa passed away tonight 2/9/07. I saw him around 3:45 PM and he looked so bad. He passed around 9 PM. I have yet to tell the girls. That will be the hardest part. I think the funeral will be on Monday and then we will sit shiva after that. We had plans to do something tomorrow with the Starlight foundation tomorrow and I might still do that to get the girls mind of the sadness, but I don't know.
Heather
Monday, February 5, 2007
Sarina saw the oncologist today. She did gain a little weight, YEA!!!!!
Her SED rate was a little up, but nothing to be too alarmed by. The one node we are watching seems down, but two new ones have poped up.
As far as the leg and back pain he wanta ortho to look at her before he does anything about that. So since we see Endo and Ortho in March and they will do lab work we can skip him in March and see him in April. So what about the PEt scan we are all waiting for. We are yet again waiting. Since the node is down we are waiting to do it in April in hopes that it is gone by then and will not give us a false read. I understand the DR feelings for this, but I do have to say the waiting is killing me. We are also waiting to see what hospital we will do it at.
We got the Camp Simcha DVD from last year and the girls have watched it non-stop, they have so much fun at camp and are counting down the days till camp this year.
No new word on Papa, they did an ultrasound and CAT scan on the liver and we are waiting to hear from the DR.
Heather
Sunday, February 4, 2007
I had a very nice birthday yesterday.
On Friday the girls had off of school so we took them to the Garden State Discovery Museum in NJ. They had a blast. Here are some pictures.
I had a very nice birthday yesterday.
On Friday the girls had off of school so we took them to the Garden State Discovery Museum in NJ. They had a blast. Here are some pictures.
Sarina sees the oncologist tomorrow for her monthly check-up. Guess we will set-up the PET scan then. She is OK, still having some stomach issues. She had to come home early from school on Thursday.
Grandpa (Papa) is still in the hospital. The DR has now said they have no idea what is wrong. There is something on the liver and they might have to biopsy it, which is dangerous with a person his age. So more tests have been ordered.
Heather
Wednesday, January 31, 2007
Sorry it took so long to update having tons of computer issues right now.
Sarina saw GI on Monday. She is still backed up, so they switch around and added some medication in hopes to help that issue and to help with the pain. She did not gain, but she did not lose any weight either. We will see GI again in 2 months and talk about the scope at that time.
Sarina took two big falls outside last week. She is OK just banged up a little. Ortho can’t see her till March so we will wait and see about leg braces then.
Elizabeth is very happy, she graduated to the next reading group in school. This is very big for her since most of her learning disabilities are in the reading area. We are very proud.
My Grandfather, the girl’s Papa is in the hospital. He had a fall in Oct and has never really recovered. Now he is having stomach and liver issues.
Heather
Friday, January 19, 2007
So finally the DR office called. The x-ray did show a major back-up. So we have to clean her out. Guess that is good news in the after all. We will start the medication when she gets home from school. Guess we will stay close to home this weekend. We have special service tonight at synagugue and I hope she is OK to go.
Heather
Wednesday, January 17, 2007
So after waiting for 3 days GI finally calls back about the stomach pain and blood in Sarina's bowel movemnets. So they want a stomach x-ray thinking she is backed up even though she has been going. So off to the hsopital for the x-ray. The tech said she saw noting that looked like a back-up, but she is not an expert. So they said they would call me today with the results........still waiting.
I will call first thing in the morning and see what they say and update you all. So angry that they are letting this go.
Heather
Sunday, January 14, 2007
Today is Brooke's birthday she is 3. So we will go to Papa's house to have a birthday party for her.
So sad that the Eagles lost, not happy at all about that one.
Sarina is having lots of stomach pains so i will have to call the DR on Monday and see what we can do to help her. Her PT said that she is so very tight. Her knee is the tightest that she has ever seen in a child. So we are doing new stretches. The Ortho could not see her till March.
Heather
Tuesday, January 9, 2007
Hello All,
We are all getting over the stomach bug that is going around, YUK.
Sarina is doing OK, she lots a little over a pound, not sure how. The oncologist said that the node is the same size, so we will do a repeat PET scan in March and stay to seeing him monthly. As far as the hip, back, leg and knee pain he thinks that she might need to go back to leg braces. Not at all what Sarina wanted to hear. So we have to see ortho about that.
Breanna's is having trouble keeping her blood sugar up, think because she was sick so lots of lows for her. Elizabeth will start yet another medication to help with her sleep issues.
Guess that is all. Please sign the guest book.
Heather
Tuesday, January 2, 2007
Happy New year to all.
Sorry have not posted, jut no time.
We had a GREAT time in Disney world. Tons of pictures to share. Breanna was sick some of the time, having trouble with her blood sugar.
Will post more soon.
Heather
Wedensday, December 20, 2006
We leave for Disney World in the morning and can't wait. So far everyone is still health and we hope it stays that way. Breanna had two small seizures the other day and is having some low blood sugar issues.
Sarina is no longer a Sixer's fan she is now rooting for the Denver Nuggets since that is were Iverson went.
Happy Holidays to all.
Heather
Monday, December 18, 2006
Sarina saw the new GI DR today. We really like her a lot. She did blood work and will see Sarina again in a month. Right now no changes, but we might try and switch around her feeds when we see her again. Also we will talk about setting up a scope to see what is going on inside.
Here are the girls on the second night of Chanukah.
We leave for Disney on Thursday and we can't wait.
Happy Holidays to you all.
Heather
Friday, December 15, 2006
Another busy week for us here.
OK Sarina and the GOOD news. We saw the new oncologist at CHOP and after looking after her reports she feels that the watch and wait is the right thing to do. She will look over the actually films and get back to us, but right now she thinks waiting and repeating a PET scan in 2 to 3 months is OK. So we feel so much better and now am not so upset with the ST Chris Oncologist. We saw him on Thursday and he is happy with Sarina's weight gain, but the node he is watching has gotten bigger. So they did blood work and we will see him in 3 weeks for a node check.
All 3 girls saw Endo on Tuesday. Sarina is doing well. Breanna is also doing well and we upped her insulin. Both girls had blood work. Elizabeth they are unsure of her strange blood work results. They have now stated she is pre-diabetic. We will continue to check her blood sugar daily and if no changes she will repeat the oral glucose tolerance test in 6 months.
Breanna saw ENT on Thursday. Her left ear shows congestion, but she does have a cold, but there is hearing loss in her right ear. Right now we will wait on tubes and repeat the hearing test in 3 months and see ENT again then.
Tonight is the first night of Chanukkah, we had a good time at Papa's house.
Happy Chanukkah to all.
Heather
Saturday, December 9, 2006
Busy week for us medically and another one next week.
Sarina first. The good news is that the GI DR was able to fix her g-tube in the office on Thursday and we were able to pull the one from her nose on Friday morning , YEA!!! Also she is now down to night time feeds only, so she can start going full day to school and not worry about carry the pump around with her. Now as most of you know up till now I have been very happy with her oncologist, till now. Since the PET scan showed stuff I am not happy with the wait and see attitude of the oncologist. So we are going to see a DR at CHOP on Wednesday and see what they say. I will tell you what they feel.
Breanna saw the neurologist on Wednesday and he said he thinks we are on the right track with the medication. As far as the side affect of moodiness, if it doesn’t get better then we can talk about switching medication in a few weeks. If she has any more break through seizures we can up her medications. He will have blood work done to check on her muscle weakness.
Elizabeth was having some symptoms so we had her checked for diabetes on Tuesday. She had blood work and an oral glucose tolerance test. Thankfully the oral glucose tolerance test was normal so she doesn't have diabetes, but we still have to do blood sugar testes every once in a while to keep an eye on her. Some of the other blood work was off so we will talk to Endo when all three girls see them on Tuesday. Lastly Elizabeth had her sleep study last night to see if she out grown the sleep apnea. Should have those results in a week or two.
Heather
Friday, December 1, 2006
Sarina is still having lots of stomach pain sp we are going to stop the 24/7 feeding pump. We are going to have her on the pump only 16 hours in the day. So we can give her some hours of break time. We see GI on Tuesday and then hope she can go back to school after that. Her school will let her go on the pump if she has to.
On a very good note we are going to Disney World and can't wait. We leave on Dec 21 and come home on Dec 26. We will spend the last 3 nights of Chanukah there. It will be so much fun and we just pray that everyone is healthy to enjoy it.
Breanna had a very small seizure yesterday and they are upping both her seizure and insulin medication.
Heather
Tuesday, November 28, 2006
We saw the oncologist and she gained a little over four pounds since leaving the hospital, YEA!!!!!
He wants her to stay on the 24/7 feeds for now which means she can not go to school, she is not happy. We see GI on the Dec 5 to set up the scope and to fix the G-tube. I will talk to oncology on Thursday and depending on how the feeds are going we will see if we can start to wean her to maybe night time only and then she can go back to school. We have yet to set up the CAT scan to see about the gland/node yet.
Heather
Sunday, November 26, 2006
I thought I had posted an update on Friday, but I guess it was lost in cyberspace.
We did make it home for Thanksgiving dinner. It was so nice to be home with the family. Sarina is on the feeding machine 24/7 and not happy about that at all.
We see the oncologist on Monday and will see what we do from here on out. They want to scope her and then replace the g-tube and then maybe it will work.
Will let you know what the DR says.
Heather
Wednesday, November 22, 2006 9:30 PM CST
Happy Thanksgiving to everyone.
We are still in the hospital. Sarina is still in a lot of stomach pain and she is still having trouble with the feeds. They are slowly increasing the feeds, but it is takeing forever. They want to make sure she will be OK to come home before they realease her. THey said if all go well we might make it home for THanksgiving dinner, but they will not promise that.
THey said they will have to do a scope on her and biopsy the stomach and replace the g-tube. I am not sure when that will happen.
Heather
Monday, November 20, 2006
Still in the hospital. They said they hope to have us home for Thanksgiving. The nose tube from the last x-ray is still a g-tube and not the j-tube like they hoped. They started to use the one in her nose and she has been about to hold down a small feed for a long time so they will slowly up the flow.
The thing is all the things they are thinking about involve some kind ofsurgery.
So right now we wait and see.
Heather
Friday, November 17, 2006
Quick update.....
Sarina is back in the hospital.
We went for another chest x-ray and the tube is still not in place so they moved it again. She lost another pound. She lost over 5 f her body weight in 2 weeks and since she is still throwing up they felt she needs to be in the hospital on fluids.
They will re-do the chest x-ray on Sunday and hope it is in place and we can start using it. If it is not they will just set ou the surgery at that point because we can't risk her losing anymore weight.
Heather
Wed. November 15, 2006
Lets start with Sarina....they did a chest x-ray today and the NG tube is not in the right place so they moved it and we will go back on Friday and rex-ray then.
Now on to Breanna. Tuesday night Breanna had a seizure, a really doze of a seizure and we had to run her to the ER. By the time we got to the ER her sugar was dangerously low. So they kept her overnight. We spoke to endo and neurology about her. Endo changed her insulin doses and ran some blood work that will take about a week. Nero said they she does have Epilepsy. The concern is that the seizures are getting stronger and lasting longer so it is now time for medications. It will take a month to get her on the full dose of the medication so she is at risk this time to have more seizures. Right now she is doing well.
Heather
Tuesday, November 14, 2006
We did have the birthday party on Saturday. Sarina was not 100nd got very tired half way through, but both girls did have fun.
We saw the oncologist yesterday. The good news is the glad is less swollen which leads them to believe this might all be an infection and not a recurrence of cancer. So in short we will re-do a CAT scan in a month and see. I hate to wait, but I am taking this as good news and will not worry, much......
Her lungs are still junked up so she is still on breathing treatments. She is still having trouble tolerating her feeds so at first we thought we would just change the type of feeding tube she has, but it turns out that would be a bigger surgery than we thought. So not something Sarina is happy with at all we replaced the feeding tube in her nose. This will act like the kind they would have switched to. We will wait and few days and try and feed her through that. If she tolerates that then we will have the surgery and change the tube in her stomach if she can not tolerate it then back to the drawling board. So right now she is very unhappy about everything. They think she might be able to go back to school on thursday so we will see.
Heather
Saturday, November 11, 2006
We are home!!!!!
Sarina is doing OK for the most part. She is not getting night time feeds but small feeds through the day, so far so good. We are ready for the b-day party later today.
Now for the I need prayer part.... We received the PET scan results. Three spots glowed. The gland and node area they were concerned about. The tonsil area and part of the stomach. So what does this mean.....it means that is active cells, but doesn't mean that it is cancer, it could be infection. That is what we are praying that it shows infection. So now we have a sit down with the oncologist on Monday to see what the next step is.
Sarina does not know any of this we don't want her to worry.
Heather
Thursdday, November 9, 2006
Good news, it looks like she will be home tomorrow after the PET, YEA!!!!!!
She is doing better and they think she will feel better at home. Her stomach test did not show anything. So they have stoped the overnight feeds and are doing small feeds every 2 hours and that is helping her. They might change the type of feeding tube she has.
So we hope to be home Friday evening and will go the Onocology clinic on Monday and maybe have the PET results then.
Elizabeth and Breanna came up yesterday and the girls were able to celebrate there b-day together.
Heather
Tuesday , November 7, 2006
Not a good day here. We were to leave the hospital at 2:30 PM fpr a 4 PM scan. The ambulance did not show till 4:45 PM so we missed the scan. Now they can't do it till Friday, so we are here till then. She has one more stomach test tomorrow morning and then maybe they can help her stomach pain.
Heather
Monday , November 6, 2006
We moved again. We are now in 597 on the oncology floor. We did one test today and tomorrow we will be ambulanced to another hospital for a PET scan. They said they need to see what that shows. She will be in for her birthday so her and Elizabeth are not happy.
Have no idea when I will know more, but will update when I can.
Want to wish my Mom and Dad, AKA Grandma and Grandpa a VERY Happy 40th Anniversary.
Heather
Sunday , November 5, 2006
We are still in the hospital. Sarina is having trouble breathing and is on Oxygen. They feel that part of her lung collasped and she does have a lung infestion. They are not sure if they can do the tests on Monday like planned. The CAT did show some enlarged nodes. There are enlarged nodes and a gland pressing on her windpipe. They are concerened with the enlarged glad. We switched from being on the the care of Endo and now are an oncology patient. They might need to biopsy the glad, but we will talk to the surgeon on Monday about that.
I only get a few minutes on the computer so I am sorry that I have not replied to anyone.
Sarina room was switched yesterday to 475. I just hope she can be home by Wed. for her birthday.
Heather
Friday, November 3, 2006
Still in the hospital. Some of the tests they want to do can't be done till Monday so we are stuck in the hospital over the weekend. They will do the tests on Monday and then we will see.
She did have a full body CAT scan today, but no results yet.
She is in St. Christopher's Hospital for Children room 472 Bed 1 the room phone # is 215-427-4784 if anyone wants to know.
She is doing OK, just feels very bad, but I hope she is better soon.
Heather
Thursday, November 2, 2006
Quick update
Sarina was admited to the hospital yesterday. She just was not getting any better. They think she might have an infection. Tommorrow they want to do a full body scan do to some enlarged nodes and a g-tube study.
Heather
Sunday, October 29, 2006
I am starting to feel better and able to get around a littloe now. Sarina is still under the weather and it looks like she has lost some weight.
Breanna is doing well. The EEG was normal, but the DR still thinks she has a seizure disorder. She was unable to get one of her booster shots at her well check-up because Nero. said no. They said if she stays seizure free till November she can have the shot. So we wait.
The girls can't wait for Halloween. I will post pictures soon.
Heather
Sunday, October 22, 2006
I had my surgery on Thursday, but it was a lot worse than I thought. I had to spent the night in the hospital. Turned out my small hernia was actually two large hernias. So they had to do three different incisions sites and filled me with mess. So I am still in a great deal of pain and today is the first day I am really up at all.
Sarina we think is finally over the stomach bug. She seems better now. She missed a whole week of school. We did get to Disney on Ice, but by the end of the show Sarina was in a lot of pain.
Here are some pictures.
Heather
Monday, October 16, 2006
What a weekend!
Sarina came home sick on Friday from school. We missed the talent show at the hospital and Elizabeth was very upset with that. They had been practicing for almost 2 months and I had the costumes all made. They were dancing to the Cheetah Girls.
Breanna had her three day EEG starting Friday. She was so brave and so good. We could not get the gauze to stay. We tried hats, bandanna, do rags. Then on Sunday the machine just went dead. The batteries just died. So we hope that does not make a big deal with the test. She got the leads off today and she feels much better. Hope to know something by next week,
Sarina is still sick. Her stomach is still upset and she threw up this morning. So she is off the feeding pump tonight and I hope she is better tomorrow. We have tickets to to see Disney on Ice for Wednesday and I hope she is up to it. I have my surgery on Thursday.
Heather
Wednesday, October 11, 2006
Breanna is five, I just can't believe it.
We got the results all is 100% normal. No tumors, no sign of a stroke and she does not have Spina Bifidai Occulta. The right sided weakness is all due to the CP. All GREAT news. She gets hooked up for the three day EEG on Friday and that is the last test we have.
Heather
Saturday, October 7, 2006
Hello,
Breanna had her MRI yesterday and it was a day that lasted forever. We arrived at 8:30 AM for a 10 AM scan. They did not get her in the machine till 2 PM. Try keeping a hungry four year old busy all that time, not fun. And to top it off since she could not eat and her sugar dropped dangerously low and they had to hook her up to IV fluids. They had trouble getting the IV in and the first IV blew and they needed to do another one. They had to knock her out her the scan since the scan was an hour and a half long. She did well for that, but now has a cough and was up all last night. Tomorrow is her birthday party so I hope she is feeling better. Hope to have the results next week.
Sarina is feeling better. She has PT on Monday so I am hoping all the new exercises have helped and the talk of going back to leg braces is not going to continue.
Wednesday, October 4, 2006
Hello,
We had a GREAT Light The Night Walk. We raised over two thousand three hundred dollars. If you click the link above you can see pictures of this years walk.
I have added Yom Kippur pictures to the photo album, so go take a look.
Sarina has been sick for the last few days, I think it is just the stomach bug.
We have lots in Oct. Breanna has her MRI on Friday, then she turns 5 on Sunday. She will have her three day EEG from the 13 to the 16. I will have hernia surgery on the 19.
Sarina and Elizabeth will turn 10 on November 8th. They want a Laser Tag party.
Great Aunt Edna passed away, she was 96 and will be missed.
Heather
Thursday, September 28, 2006
Sorry I have not updated in so long. I have added pictures to the photo album.
We had a nice Rosh Hashanah. Lots of Family around which is always special.
Sarina is doing well, still having balance issues. PT said we might need to go back to leg braces. She is not happy about that, but who could blame her. Sarina and Elizabeth are doing well in school, but get lots of homework.
Breanna is doing well. She will have her MRI on Oct 6th right before her birthday. She will have to be asleep for the test so we went to today to the hospital for preadmission testing. She will have her 3 day EEG on Oct 13 (yes Friday the 13) to Oct 16. Wish her luck.
I wish everyone a good fast for Yom Kippur.
We have the Light The Night Walk on Saturday night, we are hoping to break the goal of $2000.00. we are close, very close.
Heather
Wed., September 13, 2006
Hello,
Breanna had a good first day at preschool. Here are some pictures.
We are getting ready for the Light The Night walk on September 30th. Our goal is to beat $2000.00.
Sarina is doing well, very tired now that school started. She is having balance issues and will see the orthopedists in November.
We are still waiting for a date for Breanna's MRI, but they said it will not be till some time in November since she will have to be sedated for it.
Heather
Friday, September 8, 2006
Hello all,
Sarina and Elizabeth started 4th grade. They are in the same class and like the teacher. So far all is well. Here are some pictures.
Heather
Wednesday, September 6, 2006
So yesterday Breanna had her EEG. They told me they would do the EEG, it would take about a week to read and then they would call with an app to see neurology which would be about an appointment for about three weeks after that.
So we go for the EEG, Breanna had a hard time staying still, but overall it went well. After the test the teck said stop in at neurology and let them know you had the EEG. So I did and the lady ask if she was a new patient and her name then she said to have a seat the DR would have to see us. My heart sank.
So a resident took a history and did a physical and then we waited and waited and waited. Now it is close to lunch time and I am VERY nervous. DR comes in and has Breanna do physical stuff and does another exam and then talks to me. The EEG showed something mild, but he thinks it was movement and nothing really, but another DR will read the full EEG. In doing the exam they have DX Breanna with CP I am in shock how could I have missed that. I saw some signs and was going to talk to her DR at her 5 year old well check-up, but never though it was CP. So they need to do an MRI to see if she has Spina Bifidai Occulta also like Sarina. They also want to do a three day EEG since all the seizures started when she was asleep. So we will do the three day EEG on Oct 20, they hook her up, we take her home hooked up, keep her hooked up take her back three days later to be un hooked, this should be fun. The MRI will have to be under sedations so they will set that up and call me with the date. I think I am still in shock.
So now we do some more waiting and we will see.
Tomorrow Sarina and Elizabeth start 4th grade and they can not wait. They are in the same class and very happy about that.
Heather
Wednesday, August 30, 2006
Well all three girls saw the endo yesterday.
Sarina is doing great. They said her sugar is fantastic and not to change a thing. She is not growing though. They think it might be do to the chemo since we already checked all the growth hormone junk. So we will do yet another bone age check. She can not get growth hormone drugs due to her bone issues, but we will see what the test shows. Sarina wanted to talk about the pump, but when we got there and I said something she said she did not want the pump, oh well. They drew blood and we will see what that says.
Breanna blood sugar is way too high. We talked about lantis, but not too sure since she is not happy about three shots they did not want to add shots. She is not a candidate for the infusion or the pump due to her blood clotting issue. They will talk to other endos and hematology and see if they know of other children with her blood clotting issue that have used either with out issue, but for now we can not risk it. So we will slowly raise her NPH and pray that she does not have another low or seizure. We have the EEG on Sept 5 and will wait and see about that. Also they are worried since she will be 5 in Oct, but she is the size of a 2 1/2 year old. So they drew some blood work to see if maybe she has a growth issue.
Elizabeth was since also, because she had blood work done from neurology a while back that was off and they though Endo needed to see her. So endo said that they are not too concerned and will just follow her. Since neither Sarina nor Breanna have the diabetes antibodies it does not make senses to even test Elizabeth for that. Elizabeth is also short for her age, but the tallest of the three and the Dr is not upset at all.
They all come back in 3 months. So I guess it was not a bad visit in all.
Heather
Friday, August 25, 2006
Hello,
Hope everyone has a good weekend.
I have updated the Phillies picture above finally. Also added some new pictures to the photo album.
Sarina had a busy week, she had a hearing test, hearing is the same she is to use the FM system for school, lets see if she actually uses it. She did a bone scan, we should know something next week. Her physical therapist says her balance stinks and not sure why that is getting worse.
Next week all three girls see the endo. They might change Breanna to a different kind of insulin since her sugar levels have been very high, but are afraid to raise her insulin dosage. We will see. Elizabeth is going since her routine yearly blood work was off and they don't know why. Elizabeth also has yet another sleep study this week.
Heather
Sunday, August 13, 2006
Well we are back. First off we had a great time at Camp Sunshine. I can't say what a great place it is. The girls had a blast. Brian and I had a blast. We had so much fun and I took tons of pictures. The girls can't wait to go back next year.
Click above to see pictures of Camp Sunshine.
Now for the drama. On the way home Breanna had a seizure in the car. So we are on this major road and to be honest don't even know what state we are in. We pull over and check her sugar, it is OK, and she is still unable to talk to us. We treat her for low sugar and give her cake frosting and start to drive as I call the DR. The DR has me check her sugar and it has drop dramatically. So we are to give more frosting pull off at the next exit and get to the local hospital. So we do this, but the next exit takes us to a town with no hospital. So we find a police station and ask for directions, they are attracted to the fire station and have the EMT look at her and call an ambulance. Now Breanna is unconscious and her sugar is dangerously low. The ambulance takes me and Breanna to the closets hospital and Brian gets directions.
So in the ambulance they try and get her sugar up and in the hospital they try. She gets a little better at the hospital and is able to talk and drink. They put her on a drip of sugar water, but they can't stabilize her. We find out we are in Massachusetts. So it is decided that she needs to be ambulanced to Boston to the children's hospital. It is a bout an hour away. So again I ride in the ambulance with her and Brian, Sarina and Elizabeth follow. This time Breanna is up and talking during the ride.
In the children's hospital it takes hours to stabilize her. At first they are concerned that perhaps I accidentally gave her too much insulin in the morning, but later they rule that out. They are now not sure if they seizures are even related to the diabetes. The endo. to the hospital feels she might have a seizure disorder besides diabetes and that the seizure caused the sugar to drop and not the other way around.
So around 9:45 PM we were discharged from the hospital. We found a hotel and spend the night and drove back to Philly on Saturday. So far she seems fine. We will see what her DR her wants to do.
Heather
Thursday, August 3, 2006
Thomas is home. They think it was just a virus. He will follow up with blood test and only see a specialist if the follow up blood work is off.
Sarina comes home on Saturday and We are off to Camp Sunshine on Sunday.
Heather
Tuesday, August 1, 2006
Quick update about my nephew baby Thomas, they think it is just a virus, he is till in the hospital. They are waiting for some blood test results and then they will see.
Monday, July 31, 2006
What a few last days.....
We tried so hard to start getting Sarina off the feeding tube. So we were told to go down on her feeds and check her weight in three days, so three days later she lost a whole pounds. We were hoping we could finally say good-bye to the G-tube, but no. So we went back up on the feeds. We will try again in Oct.
On Thursday Elizabeth had to have a tooth pulled she was very brave. On Friday night Sarina was getting up off a chair and got her tube caught and yanked the g-tube right out of her stomach. So off to the ER we ran. I was worried since the balloon had popped that a piece might be stuck in her stomach. The ER DR just popped a new one in and she was good as new.
So on Sunday Sarina said good-bye and is off to Camp Can Do from the American Cancer Society. She comes back on Saturday and then on Sunday we are off to Camp Sunshine in Maine as a whole family. I know always on the go.
Here are some pictures of Sarina leaving.
I do need some prayers from you all please. Baby Thomas was just admitted into the hospital today. They are not sure what is wrong, they think maybe an infections. He will be one the end of August.
Heather
Thursday, August 3, 2006
Thomas is home. They think it was just a virus. He will follow up with blood test and only see a specialist if the follow up blood work is off.
Sarina comes home on Saturday and We are off to Camp Sunshine on Sunday.
Heather
Tuesday, August 1, 2006
Quick update about my nephew baby Thomas, they think it is just a virus, he is till in the hospital. They are waiting for some blood test results and then they will see.
Monday, July 31, 2006
What a few last days.....
We tried so hard to start getting Sarina off the feeding tube. So we were told to go down on her feeds and check her weight in three days, so three days later she lost a whole pounds. We were hoping we could finally say good-bye to the G-tube, but no. So we went back up on the feeds. We will try again in Oct.
On Thursday Elizabeth had to have a tooth pulled she was very brave. On Friday night Sarina was getting up off a chair and got her tube caught and yanked the g-tube right out of her stomach. So off to the ER we ran. I was worried since the balloon had popped that a piece might be stuck in her stomach. The ER DR just popped a new one in and she was good as new.
So on Sunday Sarina said good-bye and is off to Camp Can Do from the American Cancer Society. She comes back on Saturday and then on Sunday we are off to Camp Sunshine in Maine as a whole family. I know always on the go.
Here are some pictures of Sarina leaving.
I do need some prayers from you all please. Baby Thomas was just admitted into the hospital today. They are not sure what is wrong, they think maybe an infections. He will be one the end of August.
Heather
Wednesday, July 26, 2006 7:14 AM CDT
Sarina and Elizabeth are back from Camp. They had a blast. Here are some pictures I grabbed when we picked them up.
Once I get the film developed I will share more pictures.
Heather
Sunday, July 16, 2006
Hello All,
Sarina and Elizabeth are having fun at camp. I have not heard from them in days, which means they are having too much fun to call home. Here is a picture I took before they left for camp.
Yesterday we took Breanna to Dorney Park. It poured for an hour an a half. We had fun anyway. She had some trouble with low sugar levels at the park, but once her levels returned to normal she went on all the rides and saw a Peanuts show. Here are some pictures.
Heather
Thursday, July 13, 2006
Sarina and Elizabeth left for camp yesterday. They will be gone for 13 days. They love Camp Simcha so I am sure they will have a GREAT time.
Today at around 12:30 PM Grandma Rose passed away. We are all sad, she was a wonderful and kind women. She will be missed.
Heather
Friday, July 7, 2006
Hello,
We had a nice July 4th, even though it stormed twice. Here are the girls in shirts they made.
We did all the testing on Wed. Sarina was so good. She threw up the contrast for the CAT scan, then finally held it down. It took 4 sticks to get the IV in. The GREAT news, CAT scan was CLEAN, YEA!!!!. The echo showed that now both sides of the heart are the same side, another YEA!!!. So the DR feels that the heart is adapting to the hole and no surgery is needed. What a relief. The lung tests are not back yet, but they don't think anything has changed, they will call if they have. We will do a hearing and bone test in August before the start of school.
Aunt Ida will me moving to a nursing home for her rehab. This is just temporary, she is doing well. Grandma Rose is hanging in, but not doing well at all. She has clots in her lungs and her kidney's are failing. They said they would try and let her go off the vent to see if she could do it on her own, but not sure if they have tried that yet.
We went to the Phillies game last night as a treat to Sarina for all the test. We lost, but had a good time.
Sarina and Elizabeth leave for Camp Simcha next week and they can't wait.
Heather
Monday, July 3, 2006 8:05 PM CDT
Hope everyone has a Happy July 4th.
Aunt Ida is doing great. She was moved to the rehab floor.
PA Hank is not doing as well as we had wished. Grandma Rose is not well at all. They placed her on a vent today. They told Gran that she may only have 24 to 48 hours left on Earth. Let me explain to those who don't know the family, PA Hank And Grandma Rose are not blood family. They are actually my Sister, Aunt Jodi's in-law family. But we are so close to her in-law family the kids think of them as Grandparents and Aunts and Uncles.
So that said all of Aunt Jodi's in-law family is running to be with Grandma Rose. We will stay here in Philly and watch Cara, Samantha and Thomas while my sister (Aunt Jodi) and BIL (Big Uncle Brian) go. We hope the DR is wrong, but if he is not we hope that she finds peace.
We have tons of tests on Wed. They switched Sarina's CAT scan to earlier in the morning. They don't want her to go with out food and insulin too long. Wish us luck and cross your fingers that all is clear.
Heather
Friday, June 30, 2006
Hope everyone has a good weekend.
The rain has stopped here. We luckily are no where near the flood areas. The place we were going to go tomorrow to celebrate the 4th of July is now closed do to the flood. Guess we will have to find something else to do.
Aunt Ida is out of surgery. The DR said she did great and her heart had no problems. She is in the ICU just to be monitored, but they hope to place her in a regular room tomorrow. Thanks for all the prayers.
Elizabeth got a new mask for her C-pap so I hope this one works for her.
Heather
Thursday, June 29, 2006
Been a hectic week here. PA Hank is in the rehab part of the hospital. He had his arm and leg operated on. He is having trouble seeing and hearing. Grandma Rose is out of ICU, but has lots of fluid in her lungs, She is not very alert most of the time. My Great Aunt Ida feel and broke her hip. She is 89 and not in great health shape, but they have to operate. So she goes in for surgery tomorrow.
Sarina saw GI on Tuesday. She gained 1/2 a pound over the last 2 months, YEA. We are going to put her on yet another medication to help her stomach empty quicker.
The girls are counting down the days till Camp Simcha. They can't wait. I am looking forward to having some Breanna and Mommy time.
Sarina has tons of tests and scans on July 5. Keep your fingers crossed that all is still well. We will also see the cardiologist on the 5th to see when he thinks we should operate on her heart.
Heather
Saturday, June 24, 2006
We are back. We had a blast at the beach. Sarina did a lot of walking and only used the wheelchair when she just could not walk any more. What a big change from last year. She was in sooooo much pain the third day, but loves to be able to do more walking like the other kids.
We had fun, but some sadness during the trip. Grandma Rose and PA Hank were in a horriable car accident. They are both still in the hospital. PA Hank is doing better, Grandma Rose is still in the ICU. So poor Gran had to cut her trip short and run to PA Hank and Grandma Rose.
I took close to 800 pictures, just love the new camera. I printed close to 200. Just click abouve link to see pictures from Wildwood.
Heather
Sunday, June 18, 2006
Happy Father's Day to all the Daddies out there.
We had a GREAT Father's Day. The girls got Brian some cool gifts and he loved then all. We had breakfast at Papa's house with the whole family.
Aunt Jodi, Uncle Brian, Cara, Samantha and Tommy left for the beach. Uncle Brian, Aunt Joilene, Dylan and Brooke are already down there and are coming home tonight. We leave for the beach in the morning. Once we get there we will be with Aunt Jodi, Uncle Brian, Cara, Samantha and Tommy. Also during the time we are at the beach Pop-Pop Reilly, Gran, Aunt Cait, Uncle Tim, Uncle Pete and Leslie will be down at some point. We have so much fun, we can't wait.
I will have tons of pictures to share.
Oh, also we got to the hospital and then the had to cancel Elizabeth's sleep test. Turns out they did not have a tech on that day that knows her c-pap machine. They promised to fit her in the week we get back.
Heather
Wed. June 14, 2006
Elizabeth is home. She came home yesterday. She had lots of fun, but is very tired. Two more days of school.
Elizabeth has yet another sleep test this Friday night. She hates to stay over in the hospital. We were not going to do this till November, but her blood work was way off. They are afraid that she might be having heart issues do to the Apnea. So they rushed a test. We will wait and see.
Heather
Monday, June 12, 2006
On Saturday we sent Elizabeth off to the American Cancer Society Camp Can Do Two. It is the camp for siblings. She comes back on Tuesday. Here are some pictures of her leaving.
After we left Elizabeth we went to ACS Family Day and had a blast. Here are some pictures of Sarina and Breanna.
leave for the beach next Monday and we can't wait.
Heather
Wed, June 7, 2006
We saw Endo on Tuesday. They feel Breanna's issues are due to the fact that she is dropping too low, so they lowered her insulin doses. Sarina is also having some insulin dosing changes.
Today we saw the orthopedists. He feels the back and hip pain are chemo side affects and she might always have chronic pain. We can get her to see a pain management doctor and put her on stronger pain medications, but we decide to wait on that.
Elizabeth leaves for camp on Saturday for 4 days. It is from the American Cancer Society for siblings. She is excited, but nervous. This is the first time she is going away without Sarina.
Heather
Monday, June 5, 2006
Hello all,
Friday was the last day of school for Breanna and the class did a cute little show. Here are some pictures:
After the show we had a scare with Breanna. I will try and make this long story short. She took a small nap and when I woke her for lunch she was confused. Not responding to the question asked. Her sugar was OK. I asked her to take a bite of food and she started to eat her arm.
Both Endo and Ped said go to ER. I got some juice in her and rushed to the ER. By the time we got to the ER she was normal. So I tell the DR about what happen as well as what happen on Monday. They decide to do blood work and a CAT scan. So we wait. Finally they drew her labs and we wait some more. Now it is her snack time so I finally find a nurse and ask if she can eat her snack because I don't want her sugar to drop. She said she can give her crackers and apple juice. I didn't think juice was a good idea, but gave her the crackers. Finally we do the CAT scan and do more waiting. Now it is way past her dinner time, she is hungry and I can tell she is staring to go low.
So I grab the resident who said he was just writing up her discharge notes. He tells me the blood work and CAT was normal and she has a UTI. I go to sign the papers to leave and ask if they did a blood sugar level. So at around 1:30 PM she was 79. I flip out. Now after 6 she was never re-test and I don't think 79 is a good number. And they say endo was wrong she never had seizures she is having night terrors, WHAT!!!! He tells me that if a diabetic comes in the number is normal they treat them like a "normal" child, hello she is not "normal" she is a diabetic. Banging my head against the wall.
I demand to see the attending. So he comes and tells me that even if endo says to treat anything under 80, they do not consider it a low unless it is under 60, what? Under 60. So I tell him, but it is after 6, after her dinner time and she has not been check. He tells me she looks good to him, blood is now boiling. I demand they check her, she is 53. So I get some juice in her and tell the resident and the nurse to tell the attending that my perfectly normal looking child is 53 and even in his book that is low. So I go home, AHHHHH.
Breanna has been fine since. We had her eyes checked today and she needs new glass. Her and Breanna will see endo tomorrow.
Elizabeth is still not feeling a 100 We are going to have some blood work done on her tomorrow as well. She is saying her leg hurts and is shaking. Since she does have the blood clotting disorder the DR wants to check on some blood levels.
Heather
Monday , May 29, 2006
Breanna had a bad weekend. Saturday her level went down so low she passed out. Today she seemed OK, she feel asleep on the sofa so I tested her, she was 101 so I felt it was OK for her to sleep. About half an hour later she woke up screaming. She was shaking and unresponsive. I test her and she was 76, still not too bad. She is still twitching, crying and I can't get her to answer me. Call endo on call and give her some icing to bring her up. Endo calls back says give more icing, juice retest in 15 minutes and call back. So I try all that, she is still not responsive and twitching. retest 211 and still crying and not answering us. By the time endo calls us she seems all better. So the endo tells me that he thinks she had seizures and even though her sugar was not too off that was the reason. So we have to keep an eye on her. I am still shaking.
Elizabeth is doing much better. Sarina is also doing well, but having lots of back pain. She has PT tomorrow.
Thursday, May 25, 2006
Hello,
Sarina is doing well. Elizabeth is sick right now. Has a sinus infection and a UTI. So is having trouble tolerating the antibiotics right now.
Can't believe it is the end of may already. We go on vacation middle of June and can't wait. The girls just love the beach.
Of course Sarina and Elizabeth can't wait for Camp Simcha...July seems too far away.
Heather
Sunday, May 21, 2006
We have been very busy here. Thursday was Sarina and Elizabeth school dance show. They did GREAT. They danced to Tina Turners "Proud Mary" and Jessica Simpson's "These Boots Are Made For Walking". Here are some pictures.
Then On Friday and Saturday all three girls did there dance show for there dance school. Another great performance. Breanna danced to "Thank Heaven For Little Girls" and Sarina and Elizabeth danced to "Only You" The Backstreet Boys song. Here are some pictures.
Today Sarina is very sore, but doing well.
We want to say CONGRATULATIONS to cousin Jennifer Eberz-Peterson for passing the bar on the first try. Another Lawyer in the family.
Heather
Monday, May 15, 2006
Hello,
GREAT news, Sarina does not have a hernia. The lump is just scar tissue and nothing has to be done at all. YEA!!!!!!
Heather
Sunday, May 14, 2006
HAPPY MOTHER'S DAY!!!
We had a great day with the family. All three girls made me wonderful cards, I just love there artwork.
Sarina sees the surgeon tomorrow and she is very scared that he will say she needs surgery. I think the belly button looks much better and I think it was nothing after all. I will see what the DR says.
We have the dance shows this week. We can't wait. I will download pictures soon.
Heather
Monday, May 8, 2006
It has been a very long week here. Sarina spent all of Friday in the ER. The stomach bug got the best of here. She is still under the weather, but feeling a little better. They think she might have a hernia and we will see the surgeon next Monday.
We did get to see my friend Holly who was in from Seattle on Sunday. The girls had fun with Aunt Lynn.
Next week will be a busy week with dance shows. Wed is the rehearsal for the dance school dance show, Thursday is the school dance show and Friday and Saturday is the dance school show. The girls can't wait.
Heather
Thursday, May 4, 2006
Sarina is still sick, not eating or drinking much at all. Still has a fever and just is not feeling good overall.
We hope she is better by the weekend, a good friend is coming in from Seattle to see the girls. She has never seen Breanna face to face. I am so excited since I have not seen her in over 5 years. Of course the girls are excited that they will be seeing Aunt Lynn this weekend.
I forgot to metion that on Tuesday Brian and I celebrated the fact that we have been married for 13 whole years.
Heather
Tuesday, May 2, 2006
Hello All,
Sorry been a bit since I posted an updated. Been dealing with the stupid insurance company and not dealing well.
Elizabeth was sick all last week, she is a little better. Sarina now has the stomach bug, she is unable to hold anything down. So we are keeping an eye on her sugar level.
Heather
Wednesday, April 19, 2006
Hello,
We are so happy that Passover is almost over. All the Passover food has made both Sarina and Breanna have some very high blood sugar levels.
The weather has been so great. On Sunday we went to the Zoo and had a blast.
Sarina saw GI on Monday and she is doing well. She gained 1/2 a pound. We will see him again in 2 months. She is feeling better with some of her stomach issues.
Today Sarina, Elizabeth and I went on a class trip. We went to the theater and had a good time.
Heather
Tuesday, April 11, 2006
Hello,
Happy Passover to all. We are almost ready. Uncle David, Aunt Jackie and cousin Jess is coming in from NY to celebrate, we can't wait.
Yesterday Sarina had PT and the therapist was worried about the hip pain and the weakness on the left side. We did x-rays and the hip bone is fine. The DR thinks it is tendons pulls from all the bike riding Sarina is doing. We are to keep her active and just give her pain medication at night as needed.
We are enjoying spring break from school. I have changed some of the pictures in the photo album...take a look. We went to the Soul game on Sunday, we won by one point in overtime. Today we went to the park.
Please don't forget to sign the guest book.
Heather
Wednesday, April 5, 2006
Breanna has the stomach bug that is going around. Since she is having trouble eating and drinking we spent all day Monday in the ER. She is doing a little better, but still far from over the bug. We are trying to keep her out of the hospital.
Sarina saw Endo on Tuesday. It looks like it is true diabetes, but we have to wait for the blood work. They should have the results next week. We are keeping her on the insulin and diabetic diet. Since starting the insulin her stomach problems are gone. She has started to give herself the shots. She went back to school today.
Heather
Saturday, April 1, 2006
Sarina has a cold thing going. We have been testing her sugar levels and she will have that test on Tuesday. Well last night she went off the scale so we called the endo. We have started her insulin. The Dr is not sure if she is due to an infection or true diabetes. We are in close contact with the DR and playing it by ear. Right now we can manage her and do not need to place her in the hospital. We have all the test on Tuesday so now we wait and see.
Sarina is handling this wonderful. She is such a trooper.
Thursday, March 30, 2006
What a week it has been.....Baby Cousin Thomas was sick and it turned out he had RSV...he is doing better. Great Aunt Ida is finally home from the hospital. Sarina is sick and not eating. I am hoping that Thomas did not give her his RSV.
We had report cards today and both girls did GREAT....... Sarina has the glucose testing on Tuesday, please wish her luck. We will have the results on April 1oth when we see the endo.
Heather
Friday, March 24, 2006
Hello,
Sorry have not updated. I am doing better, had the stitches out, but still in some pain. I start PT next week and hope to be able to drive soon.
Sarina, I am afraid to say I do think has diabetes..... she could not do the oral glucose test so the DR said test her before she eats and 2 hours after. So we have being doing this. I was telling a friend who is an endo nurse at another hospital and she said that her clinic who say with the numbers I was getting Sarina does have diabetes. So the next day the endo calls and says she is worried about the # and we have to find a way to get her to do the oral glucose test. Keep testing her and calling the numbers in and we will talk on April 10 at her app.
Then Elizabeth's neurologist calls and wants to do a bunch of tests. One being the 3 month blood work and the oral glucose. They think she might be insulin resisted(sp?)......So I have to set the stuff up for Elizabeth soon.
We got Sarina and Elizabeth's Bat Mitzvah date....Oct 17, 2009....yep we do have a few years to go, but the synagogue always gives out the dates this early. Lot to plan.
Have a good weekend.
Heather
Monday, March 20, 2006 ,
Hello All,
We did St. Baldrick's day. Thank you all who donated. We raised over $400., not bad at all. Brian took it all off and Sarina and Elizabeth took over 10 inches off to send to Locks Of Love. Unfortunately the stomach bug hit Uncle Brian's house and him and Dylan were unable to make it.
I told Sarina and Elizabeth they did a double mitzvah....one they raised money to end cancer and second they donated hair to make wigs for kids going through chemo.
Here are some pictures....
Thanks for all the prayers, I am feeling better, have my stitches removed tomorrow. Great Aunt Ida was moved out of ICU and a regular room.
Heather
Thursday, March 16, 2006
Hello all,
Breanna is doing much better. Her sugar levels are almost normal, YEA!!!!!!!
Sarina is doing well. We pushed up ortho to the end of April instead of June. We will have tons of test in July, all just normal junk.
We are all getting ready for Saturday. For all that know Brian you know how big it is that he is going bald to stop cancer. He plays with his hair all the time. The girls call him Uncle Jessie from "Full House", so this is BIG. Anyone in the area come down on Sat around 3 PM to cheer him and the others on. I have talked Sarina into a short cut and not all bald. We both can live with this. Thanks to all that has donated......
Still keep Great Aunt Ida in your prayers. She is still in the ICU and had a mild heart attack, but is hang in there.
Heather
Monday, March 13, 2006
Very quick update.....
I am OK, surgery ent well I guess. I am in sooooooooooo much pain right now. They said I had shredded tendons, not sure what that is. So they had to go in fur places instead of three. They said it takes time. Thank you all for the kind thoughts, cards and food.
Breanna still has the cold and a small fever. We are keeping an eye on her and making her drink, drink, drink.
Happy Purim to all. Sarina and Elizabeth are at services right now. They are dressed as....Queen Easter...sorry I have to miss the play.
Will update when I can, but have a BIG favor. Great Aunt Ida is in ICU and not doing well. Please thinking good thought for her.
Heather
Thursday, March 9, 2006
Well Sarina lost another 2 pounds. We tried to do the tests today, but she could not hold down the medication to do the oral glucose testing. I have to wait to see what the DR wants to do from here.
Breanna is sick with a cold and fever so we are watching her sugar levels closely.
I have my shoulder surgery tomorrow and will be off-line for about a week.
Heather
Tuesday, March 7, 2006
Hello,
We had a busy weekend. Sarina is still having stomach and hip pain. She is having a hard time sleeping. She has her blood test on Thursday. They are doing hormone and diabetes checks and then she will see the oncologist. I think she has lots some more weight, we will see.
On Sunday at Hebrew school we made mask for Purim. Here are some pictures.
On March 18th some of the family is doing St Baldrick's day. That is were you get people to donate money for you to shave your head. All the money goes for Childhood cancer research. Daddy, Uncle Brian and Cousin Dylan are doing this. Sarina wants to do this badly to help raise money to end cancer. I am trying to talk her out of it because I can't deal with seeing her bald again. If you want to donate to the team "Sarina's Shavers" you can go to http://www.stbaldricks.org/team_detail.asp?id=1691. Or mail us a check made out to St. Baldrick's.
Lastly please say some prayers for Great Aunt Ida, she is in the hospital with breathing issues.
Heather
Wednesday, March 1, 2006
Hello,
All is well at our house right now. Sarina is still having back and hip pain. Elizabeth won a certificate at school, for being a high scorer in First In Math. It is an online math game. She was 10th in the school.
We went to Mardi Gras party at the hospital and had lots of fun. Here are some pictures.
Heather
P.S. Don't forget to sign the guest book.
Wednesday, February 22, 2006
Hello,
Samantha went through the surgery great and is doing well. Breanna is still walking funny, but the DR said it will take time to get over having the cast.
Sarina had PT today and did well. She has a cough, but not a bad one. Elizabeth saw the DR and they are ordering a another kind of mask for the C-pap and we hope that feels better. She will have another sleep study in May sometime.
Heather
Sunday, February 19, 2006
Hope you all had a good weekend. Nothing Big going on here. We saw Aunt Lynn on Saturday and had a good time with her. Next week is a busy week.
Please say some prayers for cousion Samantha who is having minor surgery on Tuesday. Elizabeth will see the sleep DR on Wed, maybe he can talk her into keep the C-Pap on all night. Saturday we have the hospital Mardi Gra party and we can't wait.
Sarina and ELizabeth are busy preparing for the Purim Play from Shul. I think it will a good one. Breanna is getting around well, still has a limp so I might call the DR about that, but she is not in any pain.
Don't forget to sign the guest book.
Heather
Tuesday, February 14, 2006
Breanna had her cast taken off today. The DR said she healed great. So far she will not stand on it, but the DR said that is normal.
Sarina's blood work came back a little over. So now we have to do a much longer test to rule out Diabetes. I have to call and set that up.
Happy Valentines day to you all!!!!!!!!!!!!!!!!!!
Heather
Monday, February 13, 2006
We have SNOW!!!!!!!!!!!!
About a foot on the ground. The girls had sooooooo much fun playing in it. Here are some pictures.
Sarina stayed out too long and came in the house in some pain and blue. Took her some time to warm up, but she is doing OK now.
No school today, hope the roads are better tomorrow. Breanna goes to the DR and we hope the cast comes off.
Heather
Wednesday, February 8, 2006
We saw GI on Monday. Sarina did not gain, but she did not lose weight either. He is keeping the medication as is and we can see him in 2 months.
We need to do more blood work on Sarina since her blood sugars have been off. Will have the results in a week.
I hope it works, but click on the above banner to order a great book. It is written by the Hugs and Hope founder and the art work is done by sick kids and there siblings. Sarina's art work is on the cover and both her and Elizabeth have art in the book. It is a great fundraiser for a great organization. Sarina is a past featured child on the site.
Don't forget to sign the guestbook.
Heather
Thursday, February 2, 2006
MORE GREAT NEWS!!!!!!!!!!!!!!!!!!!
The PET scan were clean, YEA!!!!! She also gained a pound.
Not happy that the groundhog ran from his shadow and six more weeks of winter.
Tomorrow is my birthday so we are taking the girls to the movies.
Heather
Wednesday, February 1, 2006
GREAT NEWS!!!!!!!!!!!!!!!
The MRI was clear......YEA!!!!!!!!!!!!!!!!!!!!!!!
The ortho. thinks the pain is just a chemo side effect and PT should help, YEA!!!!!!!!!!!!! Doing a happy dance here.
We see Oncology tomorrow about the PET scan.
Heather
Sunday, January 29, 2006
Hello,
Hope you all had a good weekend. Breanna is doing OK and starting to get around a little. Here is a picture of her in the cool red cast.
If anyone caught the news story this morning it was beautiful. I did tape it and am seeing if my brother was able to copy it to a DVD and see if I can put it on the site.
So we go to the SPCA looking to get a kitten and we wound up adopting a dog. Yes I know we are crazy, but we all fell in love with him. They say he is about 2 and so very sweet. So here are some pictures of the new family member.
Heather
Saturday, January 28, 2006
Well little Miss. Breanna decided to be a daredevil for the day. So she jumped off a chair and ....................... broke her leg. So we spent the day in the DR, getting x-rays and then a cool red cast. She was very brave.
Sarina is doing OK. Working on her PT exercises. Still having the stomach pain. We hope to have scan results on Thursday when we see the oncologist.
Heather
Local people don't forget....channel 10 news between 7 and 8 AM.
Tuesday, January 24, 2006
Hello,
Sarina had her MRI yesterday, what a day. We arrived at 11:30 AM for a 2 PM scan. Well they were backed up...so at around 4:15 PM they gave her the happy medications and took her back around 4:30 PM. They knocked her out and she was not back into recovery till after 7 PM. The test took over 2 hours. It took her a long time to wake up and she was not feeling great after. Today she is better, still sour stomach. Tomorrow we have the stomach test, another long day at the hospital. Hope to have the PET scan back tomorrow and maybe the MRI results.
Sarina also lost another tooth, she is very happy to have had the tooth fairy make another visit to the house.
The reported called and Sarina's interview will be on Sunday on the early news and again on Wed on the local news show. We can't wait. For all the local folks it will air on NBC 10.
Heather
Saturday, January 21, 2006
Sarina lost a tooth. She has been working hard to get this one out.
Her stomach pain is the same and she is still having trouble going all night with her feeds. I hope she has not lost more weight.
I am a little worried about the MRI on Monday. The oncologist made a change to the order and it will be a longer test. Not sure why he did that and I will try and ask him on Monday.
Heather
Friday, January 20, 2006
Been one of those weeks. Had blood work on Tuesday, they turned out OK, but we are keeping an eye on her sugar levels so doing random blood sugar tests.
Sarina had the PET scan yesterday, a long day. Hope to know something next week. Monday is the MRI, Sarina is very worried about this one. We hope to do something fun this weekend as a pick me up.
Sarina is having trouble at school, her teacher is out for a long time, maybe the rest of the year and she is not happy with having lots of differant teachers. We are also having trouble getting the sub to wear the FM system so Sarina missed a lot of learing because she just could not hear the teacher.
Hope you all have a good weekend.
Heather
Saturday, January 14, 2006
The new diet is not helping with the stomach pain. Sarina is able to go through a night hooked up to her feeding machine, but at a lower rate than we had her on.
We have a date for the PET scan....Thursday. So It looks like the next few weeks we will be at the hospital a few times a week. This week...Tuesday for blood work, Wed. to start PT. Thur we go to St. Chris for an IV place and then to U Of P for the PET scan....fun, fun, fun. Sarina hates PET scans so she is not looking forward to this at all. The following week she has the MRI and the GI test.
Hope you all have a good weekend.
Heather
Monday, January 9, 2006
We saw GI today. He switched around some of the medication and changed Sarina's diet. No caffeine at all, which sucks since all she drinks is tea. Wants to do another test to see how she empties, have to set that up. Wants to keep her on the feed all night even if we have to lower the rate way down, we will see how that goes. GI and Oncology talked and we will not start the new medication right now.
We finally have a start date for PT, a week from Wed, hope this helps her with the pain and falling down.
Heather
Sunday, January 8, 2006
Here is Sarina and Elizabeth with the reporter that came to our house. Her name is Edie Huggins and she is on our local NBC news.
Sarina is still having lots of stomach and back pain. She is still unable to sleep well or have a full night on the feeding machine. We see GI tomorrow and hope for some help with the pain.
Heather
Friday, January 6, 2006
Sarina is feeling better. She did not make it to school this week, but is better. She is still unable to get a full night feed, we see GI about that on Monday.
We saw the oncologist on Thursday and she lost over 4 pounds. Her lungs sound clear and he said the cough could stay with her for a few weeks. As far as her falling goes, he thinks that is just her and once we get PT restarted that should help.
If the GI DR agrees we will put her on a new medication to make her want to eat we hope. We have everything done for her MRI on the 23 and still do not have the PET set up, why you ask....insurance. They have yet to approve the PET. Don't even get me started on the insurance thing.
On a side note we finally had the reporter out to do the story on Sarina. She was so nice, I took pictures and will download then soon. She said it will be a few weeks before it is on TV, but I will let you local people know the air date when she tells me.
Heather
Tuesday, January 3, 2006
Hello All,
It has been a yucky rainy two days here in Philly. Sarina is feeling better, still has the cough. We were able to do all the family visiting on the last day of Chanukah. We even spent a little time in the mall yesterday.
Sarina was able to do half of her night feed last night, YEA!!! I think all the feeding problem was just a stomach bug. We will try a full feed tonight and hopefully that will go well. We see the oncologist on Thursday so we will see. They want to do more blood work because her sugar was so low in the ER last week.
Here is a picture of the whole family on the last night of Chanukah.
Heather
Saturday, December 31, 2005
With a little over 4 hours of 2005 to go we would like to thank all of you who have been there for us over the year in support and prayer. We wish you all a very Happy and Healthy 2006. We thank our family for always being there no matter what time what time of day or night it is.
We are spending New Years' eve low key since Sarina is still under the weather. We are just going to stay home and watch the Disney countdown. Sarina is doing better and was able to have some feed last night and seems to have a little more energy today. If all goes well and she wakes up well we have a busy day planned.
Lunch at Grandma and Grandpa's house with all the cousins. Then over to Great-Aunt Ida's house and dinner at papa's house to light the last candle. Hanukah has been fun and the girls got lots of nice things. Chai lifeline sent a nice box of toys. Lots of crafts for the big girls and some cool Dora stuff for Breanna.
Heather
Thur., December 29, 2005
We spent the day in the ER, Sarina and I. Her lungs are not as bad as they though and the gave her lots of fluids and that helped a lot. Her sugar levels was VERY low and with some sugar water they were able to get that up. She looks better.
The only thing was that the chest x-ray showed something by the heart muscle. So they did more test and discovered that it looks like a small piece of the port tubing was left in when they removed her port. It is not in the heart muscle so I don't think it poses a threat at this moment. They called the oncologist and he said he wants to see her today so we will see.
Wed., December 28, 2005
Sarina has Pneumonia and a throat infection. The DR gave us an antibiotics and new medication for the breathing treatments. We were to run fluids through her feeding machine all day and then mix in some formula at night.
She was OK with the fluids most of the day, but started to throw-up around 7 PM. Once we added the formula it was only thirty minutes before her stomach hit her. So now I wait to talk to the DR. He said if she can't tolerate the formula we will have to go into the hospital for IV treatment.
Tuesday, December 27, 2005
The first 2 nights of Chanukah were very nice. We spent lots of time with family. Some of our family is in for a few days from upstate NY. I was able to save lots of gifts and have replaced some that were lost.
Sarina is feeling very bad. Her hip is giving her lots of pain and she has not been able to keep anything down. She has not had her feeds for 3 days now. Her cough is not great and I am going to try and get the DR to listen to her lungs today. Hope it is nothing major and we can avoid the hospital.
Heather
Saturday, December 24, 2005
Breanna saw her endo. and he said she looks good and is doing great, YEA!!!! Breanna had her school holiday show and she did a great job. The star of the show....in my opinion.
Sarina is still is so much pain, but so happy about Hanukah. Sarina was given a good citizenship award at school.
My day yesterday was horrible....Turns out that someone let the faucet running in the upstairs bathroom all day. When I came home before 3 PM to get the girls from school I had a flood. It went from the bathroom, through the living room ceiling into the basement. So the ceiling in the basement is on the floor, the laundry room was flooded and...... the Hanukkah presents were floating in the water. Can you hear me creaming........?
I was able to save a lot of the presents thankfully. Breanna lost the most, but thankfully I have eight days of Hanukkah so I have a few days to get replacement stuff. The other gifts that were lost I am sure the people they are for will understand some late presents.
Heather
Thursday, December 15, 2005
Hello,
We saw the surgeon today and he feels the pain had nothing to do with the dimple. We then saw the oncologist and it has been decided that in one of her many fails she bruised her tail bone. It is a little swollen and hurts a ton. So he gave her a cushion to sit and and said it will take about 6 weeks to heal.
We have the MRI date.....Jan 23. She needs to be put under general anesthesia fir the test so it will be a long day. She also has to have a PET scan in Jan, I am waiting for the date.
Aunt Jodi had gall bladder surgery on Tuesday and seemed OK, but had to have emergancy hernia surgery today. We wish her a quick recovery.
The girls have been getting some great early hanukkah gifts. Thank you Claire and her family, Angle Chloe for the cool Hello Kitty stuff and Mortsolf family.
We can't wait for Hanukkah.
Heather
Friday, December 9, 2005 2:56 PM CST
JESSICA GRIFFIN/Daily News
Sarina Smith (right), in remission from Hodgkin's lymphoma, has been selected for a 'Young Heroes Award' and drew cover of a holiday card available through American Cancer Society. Her twin sister, Elizabeth (left), was a recipient last night.
One 9-year-old's heroic wish for you
By MARY FLANNERY
NINE-YEAR-OLD Sarina Smith painted the picture selected for the cover of a holiday card available through the American Cancer Society.
Inside is this message: "May all your wishes come true."
And what is Sarina's wish?
"No cancer in the world," she said. No hesitation. No second thoughts.
That's what Sarina wants - not just because four years ago, she fought off Hodgkin's lymphoma at St. Christopher's Hospital for Children.
As she has grown, she has spent much of her playtime making cards and collecting toys for other children with cancer.
For the last three years, she's been the leader of Sarina's Survivors, which conducts a fund-raising walk on Penn's Landing. This year, all the small donations of $5s and $10s added up to more than $2,000.
And now that she is in remission, she serves as a "Chemo Buddy" to other children receiving treatment.
"I write to them just like my Chemo Buddy wrote to me when I was getting treatment," she said. She's doing all that a 9-year-old can do to make wishes become reality.
For her spirit and determination, Sarina was chosen as one of 40 recipients of the 2005 Commerce Bank "Young Heroes Award." She and the other winners were honored last night at the National Liberty Museum in Society Hill.
"She has a giant heart," said her mother, Heather Smith. "For all that she has had, she could be bitter."
Cancer is not Sarina's only problem. She and her twin sister, Elizabeth, were born 11 weeks premature. After initial scares, Elizabeth developed normally. Sarina, however, had challenges, her mother said.
"She has mild cerebral palsy and was born with a heart defect. And chemo didn't help that. She has a gastric tube for feeding, so she doesn't eat by mouth. It takes a lot out of her."
To meet Sarina is to be charmed by her smile and her poise. The twins are third-graders at the J. Hampton Moore Elementary, Longshore and Summerdale avenues. The girls and a younger sister, Breanna, live with their parents in the Northeast within walking distance of cousins and grandparents who also join in the continuous card-making for sick children, as well as for soldiers.
Last night, the twins were dressed in identical blue velvet dresses for the awards reception. But they have different interests. Sarina likes art and Elizabeth likes music best. But they both like to dance and take lessons in tap and ballet.
Both like the Olsen twins, but not the same one.
"I like Ashley, and Elizabeth likes Mary-Kate," said Sarina.
Heather Smith nominated Sarina for the Young Heroes Award when she saw a call for nominations in a local newspaper.
"I thought she fit the description," she said.
Other Young Heroes recognized last night included: Rebecca Fallon Cohen, who trained her poodle to be a certified therapy dog and together they visit nursing homes; Dominique "Peak" Johnson, an 11th-grader and member of Philadelphia's Project HOME teen after-school program.
Also, Jay Geyer, an honors student and star athlete who speaks publicly about his Tourette's syndrome to promote public awareness; Tien Ca, a Vietnamese immigrant who became an English tutor and overcame bone cancer, and is now a Temple pre-pharmacy student; and the 216-member student body of St. Hilary of Poitiers School, in Rydal, for its Peace Program that includes conflict resolution training and anti-bullying signs.
This was in today's Daily News. We were very excited to see it on page 3. The award ceremony last night was very beautiful and inspiring.
We have SNOW.....school was closed so we were able to play in the snow for some time. We had lots of fun. I have added new pictures to the photo album so take a look.
Heather
Wednesday, December 7, 2005
So today we saw the orthopedists and he looked over both the bone scan and cat scan. He saw nothing major on the Cat Scan, but we need an MRI to make sure. The Cat Scan did show that Sarina does have Spina Bifida Occulta, but a lot higher up then they thought. They thought she might have it at the base of the spine were her dimple is, but it is more in the lower back area. So now the concern is that she has it there and at the base of the spine. So the MRI will tell us that as well.
The DR wants to restart PT to help with the pain. We also have to see a surgeon to look at the dimple and see if we need to do something about it. We see the surgeon on the 15th. We have yet to set up the MRI since she needs sedation we need the heart DR OK, but they are booked till mid January. Hope to have a date soon.
Heather
Sunday, December 4, 2005
Sarina and Elizabeth had there Aleph Class Consecration on Friday. Here are some pictures I took before we left for synagogue.
Not sure if I will get the CAT scan results tomorrow or will have to wait till we see ortho on Wed.
Heather
Thursday, December 1, 2005
Need LOTS of good vibes our way. We saw the oncologist today and Sarina lost 2 pounds. So we are going to have to up her feeds again. Also we got the results of her bone scan, the scan showed activity in the hip area. The area she is having pain.
So what does this mean you ask? We don't know what it means. It means that she has a hot spot on the bone, but not sure what that shows. It can show lots of different things and of course the thing we don't want to say out loud that this is a sign of recurrence of the cancer. So we have a CAT scan on Monday and most likely a MRI will be needed as well.
Sarina knows that she has the CT scan, but not that it could be anything major that is wrong with her hip. We don't want to worry her.
Heather
Tuesday, November 29, 2005
We have lots and lots of things coming up soon. On Friday Sarina and Elizabeth have consecration. They have been practicing and practicing and can't wait. They both have a little solo part.
Sarina will be receiving her National Liberty Museum award on December 8th. Here is the invitation they sent out. Anyone from the area that wants to come let me know and I will put you on the invitation list.
We also have three doctors for Sarina in the next two weeks.
Elizabeth was struggling in Math, but has been really working on it and got a B on her big Math test last week and 100 on her spelling test. She is also doing great.
Heather
Saturday, November 26, 2005
Hope you all had a good Thanksgiving. We had a GREAT one. Lots of food and family. Grandma is the best the cook and her turkey is world famous.
We did the bone scan on Friday. A VERY long day for Sarina. She did great and is soooooooooo brave. She had lots of pain laying for such a long time. The Tech did say that her hips were out of line. They hope the DR will have the full results by next week. We see the oncologist on Thursday and hope to talk about it then. We will also see if she has lost any weight with the reduced feeds at night.
Heather
Tuesday, November 22, 2005
We saw the orthopedists yesterday. They did a bunch of x-rays and now Sarina will need a bone scan Friday morning. The x-ray were good and since her spine curves to the right the DR thinks that is why she has the hip pain, but they are not sure why she is having back pain. The concern is that since the cancer was in the spine that we have to make sure that it is not back. So a bone scan would rule that out. It is a long test for Sarina. Have to make sure she has plenty of batteries and CD's to listen to.
HAPPY BIRTHDAY TO DADDY TODAY!!!!!!!
Hope You all have a VERY Happy and Healthy Thanksgiving.
Heather
Friday, November 18, 2005
Hello,
Been a quiet week here. Sarina is still have stomach aches, but they seem a little better. The cold weather has come so she is having lots of pain, poor thing. We see ortho on Monday and hope for some help for the back and hip pain.
Elizabeth went on a class trip to The academy Of Natural Science and I went with her. It was fun. Breanna is doing OK, still having trouble keeping her levels balanced, but they say it takes time.
Thank you so much to Shana for the birthday box and more camp pictures. Here are some pictures of the girls opening the box.
Hope you all have a good weekend.
Heather
Saturday, November 12, 2005
Hello,
Hope everyone has a good weekend. Sarina is feeling a little better with the change in medicine and formula. Hope that this is the answer.
Sarina's card is now on the American Cancer society website, you can see it by click on the link above. You still have time to order them it you want. remember the money goes to Childhood cancer programs, like the "Camp Can Do" that Sarina has attended and LOVED.....
On another GREAT note, Sarina was just told that she is one of the children to be award The Young Hero award from The National Liberty Museum. We are sooooo proud of her. The award ceremony will be on December 8th at the museum.
Thank you so much to Fred and Deb of Hugs and Hope for the GREAT birthday box you sent to Sarina and Elizabeth. Here are some pictures of them opening the box.
Heather
Wedensday , November 9, 2005
Here are some pictures of the girls at the birthday party. They had lots of fun playing dress-up.
Heather
Tuesday, November 8, 2005
Today Sarina and Elizabeth are 9. Saturday they had a great dress-up and tea party. It was lots of fun. I will post pictures soon. Here are some pictures from them opening boxes that Deeni from Camp Simcha sent them. Thank you so much Deeni.
Sarina saw GI yesterday. I felt like we wasted our time. We did not see the DR, but the nurse and we did not get much help. All the test were normal, so we are changing around the medicine and see if that helps. We will see the DR in a month.
Heather
Thursday, November 3, 2005
Sarina saw the oncologist today and she gained some weight, YEA!!!!! So we are going to try and reduce her feeds and hope she does not lose the weight. We have to see ortho about the back pain, the oncologist does not feel that the pain is a sign that anything might be back. He thinks the pain is from her hips more than the back and we might need to go back to PT. We will wait and see.
Breanna is having problems keeping her sugar levels within normal range. She went to school and I got a call that she was not her self. I rushed to school and her sugar was dangerously low and she was delusional. I spoke to the DR office and they feel that she is going into the "honeymoon" period. This is when once in a while your pancreas shoots out some insulin. So it will be hard to keep her stable. So with all this I have decided to wait on me till spring. I will have another shot in my shoulder and hope that will help till I can do the surgery.
We are almost ready for the big party on Saturday. We are having a Tea Party and I think it will be fun. Of course all those girls in the house is a scary idea, but it will be a good birthday.
Heather
Monday, November 1, 2005
Hope everyone had a nice Halloween. We had a beautiful night weather wise and a good time.
Heard from the GI and all the test were normal, so why is she still in pain..... So we will see him on Monday to talk about a change in medication. We see the oncologist on Thursday. The girls birthday party is Saturday and they can't wait.
I am suppose to have surgery on November 11 to fix a tear in my shoulder, but will wait and see how Sarina is doing before going through with it. They said I will be out of the loop for a week to ten days.
Heather
Saturday, October 29, 2005
We are sooooooooooooo ready for Halloween. Someone made Sarina a Star Trek Enterprise outfit and she is sooooooooooooooo happy. I posted that as the new picture on the page.
Here are some other Halloween pictures. I put ones of the three girls togther in the photo album.
Heather
Thursday, October 27, 2005
I am praying that the GI DR has the lab test back soon and we can help Sarina with all the belly pain. She missed school yesterday, but seems better this morning.
Elizabeth started her C-Pap last night. Let me just say it was a long night. We are not sure if they will add oxygen to the machine or not. I am waiting to hear from the DR office on that.
Sarina and Elizabeth are counting down the days till there birthday. We are having a tea party on November 5 and they can't wait.
Heather
Wednesday, October 19, 2005
Hello,
We went to the pumpkin patch on Sunday and here are some pictures.
Sarina is OK, still in stomach pain. We now have to do some more tests. I keep hoping that we get some answers and make her feel better.
Elizabeth will get her C-Pap next week. I hope this helps her and that she will use it.
Heather
Saturday , October 15, 2005
Here is the article that was in the local paper about Sarina and Elizabeth winning the ACS card contest.
Young cancer survivor’s
artwork wins contest
By William Kenny
Times Staff Writer
Sarina Smith knows what it takes to be a good artist: mainly it’s a lot of practice.
Though Smith is only 8, she’s had more than her share of free time to perfect her drawing and painting skills. In fact, a few years back, the Castor Gardens resident had little but free time on her hands as she underwent a series of physically demanding treatments for a form of cancer.
Perhaps it’s only fitting, then, that those days she spent perfecting her technique with crayons, markers and paints have helped her become an award-winning artist for the American Cancer Society.
Smith, a student at J. Hampton Moore School, recently was honored as the winner of the ACS’ competition to design one of its mass-produced greeting cards for the upcoming holiday season.
Smith’s interpretation of an angel on a blue background took first prize in the contest. Her card will be sold by the society during the weeks leading up to the holidays, with all proceeds benefiting the organization’s Childhood Cancer Program.
Amazingly, Sarina’s twin sister, Elizabeth, earned runner-up honors in the contest, which was open to all children, including cancer survivors, and judged with an anonymous ballot.
The awards, which included a $100 prize for the winner and a $50 prize for the runner-up, came as a surprise to no one more than the winners’ mom, Heather Evans-Smith, who is an art teacher by trade.
The family learned about the contest through an ACS-sponsored gathering for cancer survivors and their families.
"We submitted entries and kind of forgot about it," Evans-Smith said. "Then the woman (from the ACS) called me because she wanted to let me know that Sarina won. Then she told me that Elizabeth was the runner-up."
Sarina had prepared three pictures for the contest and submitted all of them. She painted a Christmas tree and a menorah, in addition to the angel design.
The winning entry is in watercolor. It features a smiling angel flying through a deep-blue sky. The subject has golden hair, a purple body and red wings. Sarina’s grandmother inspired her.
"She’s been collecting angels since she was seventeen, so I was kinda drawing angels," the girl said.
The dark sky can be explained by her other interests.
"I’m a Star Trek fan, so I draw stars and sometimes spaceships," Sarina said.
Elizabeth’s runner-up painting also features an angel and is representative of the children who don’t make it through their illnesses.
"It’s an angel," Elizabeth said. "It’s a kid that died from cancer, and she’s flying up and checking on God — but not really in real life."
The Smith family is very lucky to still have Sarina after her frightening bout with Hodgkin’s lymphoma.
Her symptoms surfaced in earnest when she was about 4, particularly a lump that developed in her neck. But that form of cancer is not typical in children so young, Evans-Smith said, so it took a while before experts throughout the East Coast could settle on a diagnosis.
The family visited the Cancer Center at Johns Hopkins in Maryland and Sloan-Kettering Cancer Center in New York City, among other medical facilities.
"It was a roller-coaster ride," Evans-Smith said. "Every symptom that arose, we tested for that symptom. She was a preemie to start with, so she (already) had some medical issues."
Eventually, Sarina began chemotherapy for most of a year.
She has been in remission for about two years. The youngster has monthly check-ups and blood tests, as well as more thorough testing every six months.
"It’s a long battle. It really is," Evans-Smith said. "I think it’s important that people understand the devastation that cancer does to a family, whether it’s a child (patient) or adult."
For that reason, the mother and daughters agree that the American Cancer Society is a very worthy cause. They hold regular "Kids Night Out" events where children affected by cancer can take part with their families in a variety of fun activities with others dealing with the same challenges.
One recent event was held at the Please Touch Museum, and another at the Carousel House in Fairmount Park.
"It’s a really good thing because, first of all, the children who are still in treatment are not stared at," Evans-Smith said.
Many patients lose their hair because of treatments or rely on feeding tubes for nourishment.
"It’s a really friendly atmosphere because children can just be children," Evans-Smith said.
"(The cancer society) is trying really hard. It’s a support structure that they’ve set up."
The society also funds cancer research, which is good news to Sarina, whose artwork will be seen by thousands of ACS supporters.
"It’s kinda cool," she said. "I just like it because I’m giving money to (fight) cancer."
For information about the American Cancer Society’s holiday greeting cards, visit www.acsholidaycards.org or call 215-985-5400. ••
Reporter William Kenny can be reached at 215-354-3031 or bkenny@phillynews.com
Heather
Friday , October 14, 2005
Hope you all have a good weekend. We hope to go to the pumpkin patch this weekend if it stops raining.
Sarina is still having stomach pain. We have switched around some of her medication again and will see.
Heather
Tuesday , October 11, 2005
Here are some pictures of Breanna's birthday party.
Breanna saw the DR and he said she looks good and to keep the insulin the way it is. Sarina is still having lots of stomach pain and I am still waiting for GI to call me back.
Heather
Sunday, October 9, 2005
We survived Breanna's Birthday party. Let me tell you that it is IMPOSSIABLE to get a sugar free birthday cake.
I have added the Light The Night Pictures, just click above to see them. We had a great night and I think the team made the goal of two thousand dollars. Thank you all that donated.
Will add Breanna's birthday pictures soon.
Heather
Friday, October 7, 2005
We are home in time for Breanna's 4th birthday. She is doing well. She is on three insulin shots a day, but doing OK with it.
Sarina is still having lots of stomach pains. We also found out her thryoid is off and will start medication for that.
Heather
Wednesday, October 5, 2005
A very quick update....
Right now I am in the hospital with Breanna, have been here since Monday. She has diabetes. I can't believe it, I am in shock at the moment. Hope to be home soon, her birthday is Saturday.
We had a great Light The Night Walk, will add pictures soon.
Will update when we are home.
Heather
Thursday, September 29, 2005
Yesterday was the American Cancer Society card preview party and WOW. It was very nice and they treated Sarina and Elizabeth great. The funny thing is that the professional artist that made the other cards is a twin herself. The girls thought that was very cool.
here are some pictures. The local paper did not run the story and I am not sure if it was bumped just this week or bumped for good. I also added some pictures from the night in the photo album.
Sarina saw the GI today. I actually was surprised how nice he was. We are changed some of her medication and hope that this help. We see him in a month and a half. Sarina need the tissue around the g-tube burned. She hates this, but the DR let her do it all by herself. She is so brave. She felt like it is practice for when she becomes a doctor.
We have the Oncology talent show tomorrow and the "Light The Night" walk on Saturday night.
Heather
Monday, September 26, 2005
We have a busy week coming up. Sarina and Elizabeth both got the tummy bug, but seem better now. Hope the bug stays away.
Sarina is still in so much pain that thankfully the old GI (yes the one I don't like, but he is better than nothing) has fit Sarina in on Thursday. Hope he can help the pain.
So Wednesday we have the big party to show off Sarina's card for the American Cancer Society. We have new dress and shoes. They will also have Elizabeth art there for all to see. The newspaper story should come out the same day, very cool.
Friday is St Chris's oncology talent show. The girls are busy practicing there dance, it is too funny.
And Saturday is the "Light The Night" walk. We can't wait. We almost have a thousand dollars so far.
Heather
Friday, September 23, 2005
Been one of those weeks. Sarina still is not happy with school and still not feeling good. I talked to the oncologist's office today and they fit her in with the old stomach DR for Oct 11. Not sure we want to go back to him, but if she isn't feeling better I don't want to wait till November for her to see the new stomach DR.
Breanna has a stomach bug and has been throwing up all day. She seems a little better tonight.
I have to have my shoulder operated on. Seems like I have a pinched nerve. I am going for a second opinion in a few weeks.
Have a favor to ask you all. If anyone out there knows of anyway of getting Sarina in touch with anyone from the cast of Star Trek Enterprise please let me know. She is still upset over the cancellation and not feeling well and thought that might cheer her up.
Heather
Wednesday, September 21, 2005
Sarina was so sick today she missed school. She was a little better by the afternoon. Cool news right now, the local paper is doing a story on Sarina and Elizabeth for winning the American Cancer Society card contest. They say it should be in next weeks paper, can't wait. The party for the card kick-off is next Wednesday. I am sooooooooo proud of the girls.
The website to see Sarina's card is up, but to view her card you have to have a program. Here is the site http://www.acsholidaycards.org/.
Heather
Tuesday, September 20, 2005
I had to go and say something....Sarina is again having horrible stomach pain, poor thing. The pain killers are helping, but not all the way. I finally got a new GI for her, but the earliest they can see her is Nov 3, so I took it. They promised to call if something before opens. Hope that we like this DR, he is from Children Hospital of Philadelphia and not St. Chris.
Heather
Sunday, September 18, 2005
Hello,
We are doing well. Sarina is feeling good this weekend. Her stomach seems better right now. Elizabeth had her sleep test. They say we will know something in 2 weeks, but I won't hold my breath. Here are some pictures of Elizabeth getting ready and doing the test.
Hope everyone is having a good weekend.
Heather
Thursday, September 15, 2005
Today was a good school day for Sarina, she made a friend. Her stomach is still screwed up and we had to lower the flow of formula she is getting. It seems to be helping, but I hope she does not lose any more weight.
Not to bore you with all the details Elizabeth has yet another sleep test. Cross your fingers they do it right and we finally get some answers. Neither Elizabeth or I am happy about spending the night at the hospital, but what can you do.
Just a friendly reminder that the Light The Night walk is Oct 1st. If you are in the Philadelphia area you can join Sarina's Survivors. If you want to make a donation you can send a check to the L&L society or click the link above and make an on-line donation. Thank you.
Heather
Monday, September 12, 2005
Elizabeth is out of the cast. The arm is all healed and she is VERY happy. Breanna started preschool today. She loves her preschool and could not wait. She is in the same class as her cousion Samantha.
Sarina still hates school. She hates being without Elizabeth and is feeling lonely. She is also having lots of stomach problems which is not helping. Hope that she starts to like school soon.
Heather
P.S. most of Sarina's blood work was OK, her one level was up that shows inflamation. That might be her stomach problems.
Thursday, September 8, 2005
Sorry for not updating sooner. The first day of school was Tuesday and it was hard on the girls. First time they are not in the same classroom. They are doing better now. Here are some pictures of them off to school.
.
Thanks to Deeni for send these and many more pictures of the girls at Great Adventure on Sunday.
Sarina saw the oncologist today. She lost a little over a pound, but he is not too worried. We don't have to see him for a whole month, YEA!!!! We finally got the results of Elizabeth sleep study and they said it has to be repeat. I can't believe it. This will be her 4th one. They squeezed her in for a week from tomorrow. Wish her luck.
Baby Thomas is HOME, YEA!!! He is doing great. Thanks for all the prayers.
Heather
Monday, September 5, 2005
We had a GREAT time at Camp Sunshine. I can't put into words how great a vacation it was. The kids had a BLAST. Click above to see pictures from Camp Sunshine. I have more from the regular camera as well.
Sarina was very tired and achy, but still had a GREAT time. Everyone had sooooooo much fun. All three girls were in the talent show. Elizabeth one second place in the hula hoop contest. We can't wait to go back.
We also had lots of fun at Great Adventure yesterday with Chai Lifeline. Sarina and Elizabeth went off with two people from camp and did some big rides. Breanna stayed with mommy and daddy and had fun in Bugs Bunny land.
Tomorrow is the first day of school for Sarina and Elizabeth.
Heather
Sunday, September 4, 2005
We are home.... Had a long, but safe trip home. And me being the crazy mom I am we are off to Great Adventure. I will post more about the WONDERFUL Camp Sunshine, I have tons of pictures to download and film to get developed.
Baby Thomas is doing GREAT. I hope to get to the hospital soon and see him. He is off all oxygen, YEA!!!!! He is starting to eat by bottle.
Heather
Tuesday, August 30, 2005
Sarina is doing better, has a little more energy overall. We finally got her pump and she got some of her feeds last night.
Baby Thomas is doing even better. Back to just a small bit of oxygen. Aunt Jodi came home yesterday and is feeling OK.
We leave Main on Saturday.
Heather
Tuesday, August 30, 2005
Baby Thomas is doing OK. He had a hard night and had to be put on a c-pap because he was struggling to breath. They think he might have an infection and they are treating him for that. Please add him to your prayers.
Sarina is alos not feeling very good. Her feeding pump broke and she has not had her feeds since Friday night. Hope to have a new pump by tomorrow. She is also having lots of joint pains due to the weather.
Monday, August 29, 2005
We are here in Maine. We are having a good time overall. Sarina has been a little under the weather. She had a mild fever yesterday, but seems better today.
Aunt Jodi had the baby, early this morning. Thomas Ethan Reilly was born at 2:30 AM, he weights 5 pounds 7 ounces and is 17 1/2 inches tall. He was just 34 weeks. He is In the NIC right now. He is having holding his temp and breathing. He has some oxygen right now.
Heather
Sunday, September 4, 2005
We are home.... Had a long, but safe trip home. And me being the crazy mom I am we are off to Great Adventure. I will post more about the WONDERFUL Camp Sunshine, I have tons of pictures to download and film to get developed.
Baby Thomas is doing GREAT. I hope to get to the hospital soon and see him. He is off all oxygen, YEA!!!!! He is starting to eat by bottle.
Heather
Tuesday, August 30, 2005
Sarina is doing better, has a little more energy overall. We finally got her pump and she got some of her feeds last night.
Baby Thomas is doing even better. Back to just a small bit of oxygen. Aunt Jodi came home yesterday and is feeling OK.
We leave Main on Saturday.
Heather
Tuesday, August 30, 2005
Baby Thomas is doing OK. He had a hard night and had to be put on a c-pap because he was struggling to breath. They think he might have an infection and they are treating him for that. Please add him to your prayers.
Sarina is alos not feeling very good. Her feeding pump broke and she has not had her feeds since Friday night. Hope to have a new pump by tomorrow. She is also having lots of joint pains due to the weather.
Monday, August 29, 2005
We are here in Maine. We are having a good time overall. Sarina has been a little under the weather. She had a mild fever yesterday, but seems better today.
Aunt Jodi had the baby, early this morning. Thomas Ethan Reilly was born at 2:30 AM, he weights 5 pounds 7 ounces and is 17 1/2 inches tall. He was just 34 weeks. He is In the NIC right now. He is having holding his temp and breathing. He has some oxygen right now.
Heather
Friday, August 26,2005
Yesterday Elizabeth saw the DR. The arm is healing well and they hope to get the cast off in about 2 weeks.
We are off to Maine in the morning. Will update when we get home.
Heather
Wednesday, August 24, 2005
Today we got a huge box in the mail. It was from Deeni from Camp Simcha. The girls loved everything in it and I loved the pictures. We thank her soooooo much.
Here are pictures of the girls opening the box. 
Sarina is still having stomach pain. Elizabeth will have her arm checked tomorrow. She is so sure it is all healed and the cast will come off. I told her she has at least another 2 weeks to go. She will not be happy tomorrow when the DR tells her the cast stays.
I still have so much to pack and so little time.
Heather
Tuesday, August 23, 2005
Thanks for all the thoughts and prayers, Aunt Jodi is pregant, she is home and baby is doing well. She is now at 34 weeks and they think the baby is almost 5 pounds. She is to take it easy and just wait.
Sarina is having lots of stomach pain and we don't know why. I am still packing for our Maine vacation and we are all getting excited.
Heather
Saturday, August 20, 2005
The girls are doing well overall. Sarina is feeling good, still a little extra tired, but good.
We are going to Maine on August 27th for the week. It is a place called Camp Sunshine. It is a good place for families to relax while dealing with the ilness of a child. I heard it is a good place and we are looking forward to it.
Uncle David, Aunt Jackie and Jessica are coming in to see the family an the girls can't wait. Also our friend Bobbie will be in Philly this week all the way from Israel and we can't see her.
Lastely we could use some prayers for Aunt Jodi, she went into labor on Friday and she is only 33 weeks along. They have stoped the labor and she is stuck in the hospital for now. They are hoping to hold her off a few more weeks.
Heather
Tuesday, August 16, 2005
We went to the Phillies game last night. We had fun, but the Phillies lost. Here are some pictures from last night.
Heather
Sunday, August 14, 2005
Sarina is home. She had a GREAT time at camp. She took no pictures so I hope other people took pictures and will share them. She went to Hershey park and had a great time at the Western Dance, she even had a date. She danced with her friend Zack. It was a little hard to be at camp without her friend Lee, but she did well. She has again decided to walk with 2 balloons at The Light The Night Walk. One for her and one in memory of lee. Here are the pictures I got of her coming home from camp.
Elizabeth is doing well. Still in some pain, but happy to get lots of people to sign her cast. Here she is in with her cast.
Heather
Friday, August 12, 2005
Well, we spent the night in the ER with Elizabeth. Turns out she broke her arm. She feel off the monkey bars right on her right arm. She broke the radius bone. So now she is in a cast and not a happy camper.
If anyone wants to send her some happy mail you can send it to:
Elizabeth S.
1347 Kerper Street
Phila., PA. 19111
Sarina comes home from camp tomorrow and I can't wait.
Heather
Wed., August 10, 2005
Quick update
Back from the hospital. Elizabeth did very well on the sleep study. It took forever to hook her up and get everything working right. She was a trooper. We should know something no later than 4 weeks from now. So now we wait.
Sarina comes home on Saturday.
Heather
Tuesday, August 9, 2005
Elizabeth counselor, Devora from Camp Simcha just e-mail me some GREAT pictures from camp. Here are just a few I wanted to share.
It was so hard to pick since she sent sooooo many great ones.
Heather
Have not heard from Sarina, but at this camp they are not allowed to call home. Please keep everything crossed that she is doing well.
Elizabeth will be spending the night at St. Chris Hospital for yet another sleep study. I hope that this time we know for sure if she still has Sleep Apnea or not. Wish us luck because she HATES being hooked up at all the machines.
Heather
Sunday, August 7, 2005
Sarina is off to Camp Can Do. Here are some pictures of her saying good bye 
and also this year theme is Western so I made her a cowboy outfit and here are some of her modeling it.
Heather
Thursday, August 4, 2005
First of all Sarina gained some more weight and is doing GREAT. She leaves for another camp on Sunday.
Second Sarina won the American Cancer Society greeting card contest. Her drawing will be on the holiday card this year. Ironically Elizabeth was the runner up. They will have a kick-off party end of September to show off her card and the other items the ACS will be selling. Since Sarina is a childhood cancer survivor all the profit from her card will directly go into the ACS childhood programs, like the camp she is going to on Sunday.
Heather
Sunday, July 31, 2005
We went to Giggleberry Fair today. The girls had lots of fun. Breanna refused to go into the jungle gym part, but had fun playing with all the balls. Here are some pictures.
Sarina will see the oncologist on Thursday for a check-up and lab work. If all goes well she is off to yet another camp on Sunday for a week. This one she goes all by herself.
Heather
Friday, July 29, 2005
We saw the surgeon yesterday and he said the G-tube was a perfect fit, like I was saying. He did have to burn off the extra tissue, poor kid. I hate to see her cry. We talked about going and doing the reflux surgery, but will put that on the back burner for a few months.
Today Sarina graduated from Physical Therapy. They said they did all they can do and as long as she does her home exercises she is good to go. This is the first time she will not have PT since she was about 13 months old.
Heather
Wednesday, July 27, 2005
They are home. The girls had soooooo much fun at camp. They came home with lots of things they made and lots of gifts. Not many pictures since Elizabeth let her counselor take her cameras home with her, she said she would send the developed pictures later. Sarina lost two of her cameras and took only a few with the remaining cameras. Sarina also lost her favorite stuff animal "Curtis", I did have one of his brothers to replace him, but it is not the same thing.
Elizabeth got so sick on the bus ride home. She was throwing up a lot. Not sure if she has a bug or it was the heat. Sarina sees the surgeon tomorrow to check the G-tube and most likely burn off the extra tissue around the tube.
Here are some pictures I took today with Sarina and Elizabeth camp friends. The black and white ones were from the camp and it is with their counselors.
Heather
Sunday, July 24, 2005
Sarina and Elizabeth will be home on Wed. They are having a blast at camp. Sarina did have some minor medical issues, she was at a night time concert and fell asleep on the counselor. When the concert was over they were unable to wake her up. They rushed her to the infirmary and gave her fluids. She did wake up and then threw up. They continued the fluids and now she is fine. Not sure what that is all about. I will have to talk to the DR when she gets back.
We are getting ready for The Light The Night Walk her in Oct. If you wish to make an on-line donation you can click on the above link. If you would rather send a check e-mail me and I will give you all the info.
Heather
Thursday, July 21, 2005
Hello,
Sarina and Elizabeth are loving camp. Yesterday they went into New York and did some shopping. We pick them up next week. Can't wait to hear all the stories. I hope they took some pictures, but last year they came home with lots of film that they never used. I will have to wait and see.
Sarina will see the surgeon the day after she comes home to look at the G-tube and burn off all the extra tissue. I just hope she is eating at camp and has not lost any weight.
Heather
Thursday, July 21, 2005
Hello,
Sarina and Elizabeth are loving camp. Yesterday they went into New York and did some shopping. We pick them up next week. Can't wait to hear all the stories. I hope they took some pictures, but last year they came home with lots of film that they never used. I will have to wait and see.
Sarina will see the surgeon the day after she comes home to look at the G-tube and burn off all the extra tissue. I just hope she is eating at camp and has not lost any weight.
Finally got around to make a website for on-line donation for The Light The Night walk. So if you want click on the above link and make a donation to our team "Sarina's Survivors".
Heather
Sunday, July 17, 2005
Sarina and Elizabeth are loving camp. Sarina called the other day and said that she rode in a helicopter and was a waitress for dinner. They are both doing lots of crafts.
We took Breanna to Dorney Park yesterday. She had soooo much funny, all the attention on her. She was even picked to be in the Snoopy Show, but got scared when it started. Here are some pictures.
Heather
Wedensday, July 13, 2005
I did talk to the surgeon who was not worried at all about the G-tube, told Sarina to have a good time at camp and will see her when she gets back. She is not happy they have to burn off the extra tissue, but that does have to be done.
Van is still in the shop, but we were able to squish everything into DH's car and the girls made it to camp. Here are some pictures of them off to camp.
Heather
Tuesday, July 12, 2005
I had one of those days today. We saw Sarina's GI today. Did I mention that I hate the jerk. Anyway after talking to the med student it is decided to change her stomach medicine yet again. I get enough samples to let her take with her to camp since I have to get permission from the insurance company to fill the new medication.
So then in walks the DR, takes a very quick look at her and decided the G-tube is two small, might be infected and has to burn off the tissue. When I tell him that the surgeon felt a bigger one was not right he gets in a huff and says to talk to the surgeon then and walks out. Never tells me when to give the new medication and I am now told he never needs to see her again.
So we pop into the surgeon who can't see her today, but leave a message. Talk to the oncologist who said the GI called him already saying I was refusing medical treatment. The oncologist felt we can wait to burn the tissue till she returns from camp and only the surgeon can decide if the G-tube is too small. So we go home.
Med student calls and says that Sarina has to see the surgeon no later than a day or two. So I tell her the surgeon could not fit her in and she leaves for camp in the morning. It will have to wait two weeks. Now I am told it can't wait it can be harmful for Sarina. So why didn't the GI say that at the office.
Then the surgeon office calls and says the surgeon Is out of the office, but might need to see Sarina in the morning. I tell her she needs to leave for camp early in the afternoon. I am told the surgeon will call me, still waiting for the call.
So then we get in the van and it turns out I snapped a belt. Have it towed to the garage and they aren't sure it will be ready for me to get the girls to the camp bus. AHHHHHH!!!! So now I wait and pray they can fix it in time or I need to rent a van to get the girls to the bus which is about 2 hours from my house.
Oh a good note they are all packed and ready to go to camp.
Heather
Monday, July 11, 2005
GREAT NEWS.....Sarina's PET was all clear, YEA!!!!!!!! We will see the oncologist when she gets back to camp, but very happy with the scan.
We see GI tomorrow and then off to camp on Wed.
Heather
Saturday, July 9, 2005
Sarina and Elizabeth leave for camp on Wed and I am busy packing. I also made them some skirts to wear since I could not find any that were right. They are going to a Jewish religious camp for special children for 2 weeks, called Camp Simcha run by Chai Lifeline. Since it is a religious camp the girls have chose to dress like Orthodox children which means long skirts. I am not fond of the idea, but they wanted to so I had to sew a few basic skirts for them.
The girls can't wait. I am happy for them, yet a little nervous. Two weeks seems like forever. Last year I only let them stay for 1 week.
Sarina sees GI on Tuesday and we still have no news on the PET scan. Her stomach seemed distended today so I hope the G-tube did not move.
Heather
Tuesday, July 5, 2005
Hope you all had a very happy 4th of July. We had a fun time with the family. The weather was nice.
Sarina had her PET scan today, everyone cross your fingers that we get clean scans.
We are starting to pack for camp. Sarina and Elizabeth leave for Camp Simcha on July 13 to July 27th, they can't wait.
Heather
Wednesday, June 29, 2005
Hello,
First I would like to thank Abbe Effron for the fantastic box she sent the girls today. As Sarina opened it she said she was in Star Trek Heaven. A very happy kid. Here is a picture of her in the box with all the very cool Star Trek stuff.
On Monday we saw the surgeon and had the G-tube changed. Sarina refused to let them burn off the extra tissue. Sarina gained....drum roll please....3 pounds....YEA.
Today we had blood work and Sarina and Breanna saw the cardiologist. All is stable with Sarina and we have decided not to repair the heart defect for at least another year. Breanna did great. She still has the heart murmur, but the Echo showed the hole has closed on it's own and the DR feels she no longer has ASD, YEA.
Heather
Sunday, June 26, 2005
I have added the beach pictures to the photo album. Today we went to the new Adventure Aquarium in NJ. It was nice, but I think it looks just like the old one. the girls had fun and Breanna wanted to take home a starfish very badly. Here are some pictures. 
Sarina has PT tomorrow and hopefuly the surgeon can change the G-tube button. We will see what her weight is.
Heather
Saturday, June 25, 2005
We are home.......
We had a BLAST at the beach. We did the boardwalk, the beach and the hotel pool. All three girls had sooooooo much fun. We went with Aunt Jodi, Uncle Brian, Uncle Tim, Uncle Pete, Aunt Cait, Pop-Pop Reilly, Gran and cousins Cara and Samantha.
Sarina did well overall. She did use her wheelchair for the boardwalk and I think that was a big help. She had lots of stomach pain, we will talk to the DR on Monday about that.
I will have to scan pictures and post them soon.
Heather
Sunday, June 19, 2005
Happy Father's Day to all the Dads out there. We had a nice Father's day with family and then some shopping. Sarina and Elizabeth are still using there award money.
Saturday we went to a Americam Cancer Society "Family Day" and had lots of fun.
We are off to Wildwood NJ to the beach in the morning. Girls can't wait.
Heather
Thursday, June 16, 2005
Sarina did not have her G-tube changed today. They Surgeon had to burn off some extra tissue that is growing at the G-tube site. She lost a 1/2 a pound. They will try and change the tube in about 2 weeks.
We leave for the beach on Monday for a few days and the girls can't wait.
Heather
Sunday, June 12, 2005 9:56 PM CDT
I am sooooooooo proud of Sarina and Elizabeth. At one of the local malls (Franklin Mills) they had a contest for children that give to the community. I entered the girls since they do "The Light The Night Walk" make cards for sick kids (www.hugsandhope.org) and soldiers (Operation Male) and help me with Chemo Angels.
Anyway they won first prize. The Award ceremony was Saturday, we got an award, each received a certificate to the mall worth $175. and each was given $125. in there name to the organization they picked. Sarina picked Leukemia and Lymphoma Society and Elizabeth picked Hugs and Hope.
Here are some pictures.
Heather
Wednesday, June 8, 2005
Sarina is doing well. The site around her G-tube is looking better and not bothering her too much.
We went to the Phillies game last night. The Phillies won, YEA. The girls had a blast. Here are some pictures.
Heather
Thursday, June 2, 2005
We saw the oncologist today. Sarina gained over 1 pound, YEA!!!!!!! Her G-tube was slightly infected and they had to clean it out well and it hurt. Sarina was in some pain after.
Also the DR has found three new enlarged lymph nodes in the neck area. So he has ordered a PET scan to see what is up. I am hoping to be able to wait till after our vacation to the beach. We see the surgeon on the 16th to change the G-tube as long as the infection is gone.
I am sure the enlarged nodes are nothing, but you can't help but worry a little. Sarina is not aware of the nodes and thinks the PET is just a routine scan.
Heather
Tuesday, May 31, 2005
Hope everyone had a good long weekend. We did lots of nice things this weekend. Sarina was so tired by Monday that she just kind of hung around and rested. She sees the oncologist on Thursday and I hope for a weight gain report. She is still having some pain at the G-tube site, but they say that is normal.
On Saturday we went to the Zoo and had a blast. The girls rode on everything, even a camel. Here are some pictures from Saturday.
Don't forget to sign the guest book.
Heather
Thursday, May 26, 2005
Hello all,
Sarina did FANTASTIC at her school dance show. She did both tap and ballet. It has been cold and rainy so she is in some pain, but danced right on. Here are some pictures from the school show.
Heather
Tuesday, May 24, 2005
We saw the stomach DR today and we put Sarina on yet another stomach medicine. If she is not better in a week he wants to see her again and maybe do an MRI. He was also afraid the G-tube was infected and need to be change. So off to the surgeon we went,
They cleaned under the tube and said it looks good and will change it on June 16th.
Sarina has her school dance show on Wed and thur.
Heather
Monday, May 23, 2005
The dance show went well. All three girls were GREAT. Here are some pictures from the show.
I also added more Dance Show pictures in the photo album.
Sarina was very tired after the show, but was great. We see the stomach DR in the morning and hope he has some answers and can help her belly pain.
Heather
Wednesday, May 18, 2005
New Picture on the top of the page is from tonight's dress rehearsal for the Dance Show this weekend. All three girls did great.....
Also here are some pictures from the blankets the girls were sent from Blankets With Love....thanks Lauren....here is her site http://www.geocities.com/blankets_with_heart please check it out.
Sarina is still having lots of stomach pain, but she made it through her dance routine.
Heather
Tuesday, May 17, 2005 4:39 PM CDT
Hello All,
Sarina is still upset with the ending of Star Trek Enterprise and the fact that she did not win the contest. She is not watching the DVD's of the 1st season over and over again. She is having lots of stomach pain, which I hope is just the stomach bug that is going around. We see the GI DR next week.
Today was Olympic Day at school and Elizabeth's team came in second place.
All three girls are getting ready for the Dance show that is this weekend. I will post pictures after the show.
Heather
Don't forget to sign the guestbook.
Friday, May 13, 2005
Hello All,
Sarina is doing OK, still having pain in the g-tube site. She is also sad since tonight is the last episode of Star Trek Enterprise. Elizabeth saw the neurologist on Thursday, she needs another sleep study done.
We went to the Phillies game last night. We had a good time, but the Phillies lost. Sarina's favorite player did hit a homerun. Here are some pictures.
I finally did it, I cut my hair. Been a long time, but wanted a change. So I cut it off and am donating over 13 inches of hair to Locks Of Love. Here are the before and after pictures.
Heather
Wednesday, May 11, 2005 10:11 PM CDT
Sarina had her test, so far all is looking good. Chest x-ray was clear, YEA. Her heart test came back good, same as before. We will talk to the DR in June about her having the heart surgery to repair her heart.
Her lung function test (PFT) went well should know something in a bout a week.
And the GREAT news, Sarina gainned a little over 2 pounds.
Sarina is doing well, but having lots of pain at the G-tube site. I hope that the pain goes away soon, or I will have to call the surgeon.
I added new pictures in the album so take a look.
We want to tank our friend, Sarina for the great gifts. The sign is haning on Sarina's door. Please stop by her site and say hello http://www3.caringbridge.org/pa/sarina_d/
Don't forget to sign the guest book.
Heather
Monday, May 9, 2005 10:48 PM CDT
Hope everyone had a good weekend. Sarina had a blast at camp. She came home happy and tired. We had a nice Mother's Day with the whole family at our house.
Sarina and Breanna saw the orthopedist today. Breanna is doing great and growing out of her leg turning in. Sarina is also doing well. They did some spine xrays and her spinal curve is a little more, but nothing to worry about right now.
Tomorrow Sarina had a lung function test, chest x-ray and echo. She is getting out of breath and we want to see why.
Heather
Friday, May 6, 2005 3:13 PM CDT
Happy Friday,
Sarina is doing GREAT. She had a small problem in school yesterday, she got hit by a kick ball right in the G-tube. She was in some pain, but made it through the rest of day in school. When she came home I noticed some blood at the G-tube site. After a quick call to the surgeon I found out that all was OK. She was fine in the morning.
Sarina is off to Camp-Can-Do in the morning. She will be home Sunday afternoon, it is only a camp reunion. The camp is run by The American Cancer Society.
Breanna is slowly getting use to her glasses. She still removes them when she gets the chance.
Happy Mother's Day to all you Mothers out there.
Heather
Monday, May 2, 2005
Hello All,
Sarina made it a whole day in school today. She did GREAT. The weather has been bad, cold and lots of rain so Sarina was in some pain, but overall did well.
Breanna saw the eye DR today. She was very brave and we found out she does need glasses. Do to her early birth the DR said. So we got her glasses. She cried at the DR offices she did not want them and cried at the eye glass place. She did put them on a little today so i hope as she gets use to them she will not fight me that much. Here is a picture of Breanna in her new glasses. 
Heather
Don't forget to sign the guestbook:)
Thursday, April 28, 2005
Sarina had her stitches removed and the DR said she is healing nicely. She did though lose over a pound since the surgery. We are going to try a new formula and hope she starts to gain. She is down over 3 pounds since March.
The good news is that she is now has to do scans every six months instead of every three months. She has a busy May, she will see the orthopedist, cardiologist, oncologist, stomach DR, have a lung function test and a chest x-ray. And we can't forget that all three girls are in a dance show and Sarina is also in the dance show in school.
If all goes well she can go back to school on Monday.
Heather
Wednesday, April 27, 2005
Sarina is doing well. We see the surgeon tomorrow to have the stitches removed.
Here are some pictures of the girls from Passover.
And here are the seder plates that Sarina and Elizabeth made
Heather
Tuesday, April 26, 2005 6:23 AM CDT
Hello all,
Thanks for all your kind words and prayers. Sarina is doing well. She still has some pain, but getting around well.
We had two very nice seders and so far Passover is going well. Breanna is not very into the Passover food, but getting along.
Elizabeth was "Student Of The Month" at her school. A very big award and she worked very hard to get it. It is hard for her to go to school without Sarina, but she is doing great.
We see the surgeon and Oncologist on Thursday. I am hoping that Sarina has gained some weight.
Heather
Friday , April 22, 2005
We are home!!!!!! Sarina is still in a lot of pain and not eating at all, but doing well. We are happy to be home in time for Passover.
Thanks for thinking of Sarina.
Heather
Thursday, April 21, 2005
Quick update. Sarina was able to have the operation. They found nothing wrong and still do not know why she is having stomach pain. They did place the G-tube.
She is in a lot of pain and need oxygen yesterday and throught the night. We are now seeing how she does off the oxygen. If all goes well we might come home tomorrow.
Thanks for all the kind thoughts and prayers.
She is at St. Chris in Room 488.
Heather
Monday, April 18, 2005
We had a nice weekend. Very busy, 2 birthday parties and a party at The Please Touch Museum for the American Cancer Society. The girls had a blast, Elizabeth and Breanna won something in the raffle.
Here are some pictures I took on Saturday:
Sarina is very nervous about the surgery. She has a small cough, so the DR said to bring her in on Wednesday and then they will decide that day if the surgery is still on. So I hope she wakes up cough free.
We want to thank Sandra Adams for the great pillow she made for Sarina. It is already packed to go to the hospital.
Heather
Tuesday, April 12, 2005
Hello,
Sarina is not feeling great. I hope it is just the change in weather and that she is not getting sick. I would hate to have to put off the surgery.
Please sign the guestbook. Sarina loves to see who came by.
Heather
Saturday, April 9, 2005
Hello All,
We are starting to get spring weather, YEA!!!!
We did some spring shopping today. Sarina is starting to get very nervous about the upcoming surgery. We also found out that after the surgery she will not be able to do Karate for 6 to 8 weeks. We have not told Sarina that because it will upset her too much. She is also upset that she will not be able to go with her class to the circus.
For those who asked here is an address you can sent any well wishes or small gifts. She does love to get mail and I do think she will need some cheering up after it is all done.
Sarina S.
1347 Kerper Street
Philadelphia. PA. 191111
Please do not feel like I am asking for things for Sarina it is just that some people have asked about sending her some stuff.
Heather
Monday, April 5, 2005
Sarina did great on her tests today. One was not at all comfortable, but she is a trooper. Thankfully everything went well and her Kidneys and bladder are great. So we will have the operation on April 20th. She will have the G-tube placed and the DR will take a look around and see if we can find out why she is still having stomach pain. If all goes well she should only have to stay in the hospital overnight, but will be out of school for 2 weeks.
Monday, April 4, 2005
Thanks for checking in on Sarina. She had a good weekend overall. Just some pain on Sunday. We have all the tests tomorrow and hope for a date of the surgery soon. Keep your fingers crossed please.
Just thought I would let you all know how I am feeling right now. The last few weeks I have been a little blue. I guess just feeling sorry for myself and for Sarina. I want life to be "normal" again, no more medical issues. I am worried about Sarina's upcoming surgery. So today I get a simple e-mail, an e-mail from a stranger that is now my cyber friend. A simple e-mail to see how things are, a thinking of you e-mail. I now realize that yes I HATE all the medical issues we have to deal with, but I also realize that all the medical junk has made us see the world differently. Complete strangers think and pray for my daughter. They take time out of their busy life to care. Something the news no longer shows us is that the world is still good. So to all you who think a simple card, e-mail or signing a guest book is not much believe me it is a LOT, a means a great deal. It lets us know that you care and that the world is still a beautiful place.
Heather
Monday, March 28, 2005 3:11 PM CST
Hello All,
We are thinking of building an Ark here. We have gotten way too much rain.
Sarina is feeling better, she sent most of spring break sick, but today she was feeling much better. She is even eating a little.
Thank you Joann for the very cool banner I finally found out how to paste it to the site.
I have included a brief history of Sarina for all the people that have asked.
Please sign the guestbook.
Heather
Thursday, March 24, 2005
A quick update. First the reflux test showed she does not have reflux. We saw the surgeon today, Sarina lost some weight and is having bad stomach pain. After a talk we have decide that we need to check out her kidneys before setting up the surgery. So we will do two test on April 5th and then see the surgeon. If there is not kidney damage shown we will then set up the surgery. I understand that we need to make sure everything is OK, but more waiting. Sarina was upset because she had finally accepted having the operation now and we have to wait again.
Sunday, March 20, 2005
We saw Aaron Carter on Saturday. Sarina was in heaven all week waiting for Saturday. A new girl store called Club Libby Lu was opening and she got an invitation (her and a thousand other girls) to come and get a make-over and meet Aaron Carter. She actually screamed when she read the invitations.
So Sarina, Elizabeth and my niece Cara went to the mall early Saturday. There were tones of girls already there and many more came after us. We waited forever, OK not forever an hour and half and line was moving. Frankly Elizabeth and Cara were just there for the make-over, but Sarina was so happy to see Aaron Carter. She brought him a bracelet from the hospital (ST. Chris) and one from Cure Search.
So anyway we get to the back of the store and Cara and Elizabeth get the autography, Sarina shyly goes over and says "HI", he did look up and smile. I have to say that he was a very sweet person. So she put the bracelets on the table and the assistance asked if she wanted Aaron to autography them, so now Sarina is just starting at the guy too shy to say a word. I tell them No, she brought them for him and what they were for. He picked them up and said thank you, I am so happy Sarina did not faint. Anyway the girls had the make- over a little later and I noticed in the pictures I snapped them that he was actually wearing the bracelets. Sarina was so happy. It was a good day. Here are some pictures I took.
Sarina has the start of her stomach test tomorrow, think good thoughts.
Heather
Thursday, March 17, 2005 8:20 PM CST
We saw the oncologist today. The sweet test came back negative so she does not have CF. It does looks like the surgery and G-tube is the way to go. They feel that the chemo is the cause of the weight loss and it will not get better on it's own.
So we will finish the tests next week and see the surgeon on the 24th.
Wednesday, March 16, 2005 8:20 PM CST
Hello All,
Sarina is doing OK right now. The new medication does seem to help her stomach pain. We see the Oncologist tomorrow to talk about all that has happen with the testing. Thankfully she does not have CF, the test came back negative.
This Sunday we went to a Purim Carnival and had fun. The girls all dressed up like a Bratz Doll. 
We also had Spring pictures taken, 
Please remember to sign the guestbook, Sarina loves to hear from you.
Heather
Friday, March 11, 2005 9:03 PM CST
Thursday Sarina had the Upper GI and it showed that everything is fine. Today we saw the stomach DR, so far everything is normal. He can not find any reason for the pain or the lack of weight gain. We also did the sweat test today. The stomach DR feels at this point Sarina is classified as Failure to thrive and he thinks the chemo caused this and it is not fixable. He wants to have exploratory surgery to make sure we did not miss anything and have the G tube placed at the same time. Not 100% sure of either of these things.
So right now we will do a reflex test the week of 3/21 and see the surgeon on 3/24. We will also see the oncologist on 3/17. So once all the test are completed and I have talked to all the DR we will decide if the surgery and G-tube is best for Sarina.
Heather
Wedensday, March 9, 2005
Well the weather is crazy here. We had snow and ice yesterday. Cold today and more snow/rain mix Friday and Saturday.
Sarina has been having leg pain, I think from the cold weather. Her stomach is bothering her, she came home early from school today.
We have a stomach test tomorrow. We see the GI DR and have the sweat test on Friday. We see the oncologist the following Thursday. Hope for some answers soon.
Sarina did gain almost 2 pounds which is GREAT news.
Please sign her guest book so we know you were here.
Heather
Saturday, March 5, 2005
Please check out the new pictures. We thank our friends Connie and Madeline for the very cool new dance outfits.
Sarina made it through dance class today, but was so tired after. She took a long afternoon nap.
I am keeping a food diary and now that I see it in black and white I realize how very little Sarine eats.
Hope for some answer with all the tests this week.
Thursday, March 3, 2005
Sarina is feeling better today. She will try and go to school tomorrow.
As most of you know Sarina is a huge Star Trek Enterprise fan. Well, the show is going off the air and she is very sad about that. Anyway they have this contest going to win the DVD's and a uniform that Sarina's favorite guy wore on the show. If any of you could enter the contest and if you win give the prize to Sarina I would really appreciate it. Here is the site http://www.upn.com/shows/enterprise/frontier_sweepstakes/
Wedensday March 2nd
Sarina had the stomach scope today. All went well and she was so brave. Now for the good news bad news part. Ironically the good news is also the bad news, they found nothing. Great that it was nothing major, bad that we still have no idea why she can't gain weight or why she is having the stomach pain.
The DR took a bunch of biopsies and we should know something next Friday when we see him. He also ordered an upper and lower GI test and a sweat test to see if it is Cystic Fibrosis. So we are doing all of this next week and hope for an answer. He also changed one of her medications. If this does not give us answers we need to do a stomach surgery.
Heather
Sunday, February 27, 2005 10:25 PM CST
Breanna saw the ENT on Friday. Both tubes are out of her ears and she passed the hearing test, YEA!!!!! Before the tubes were placed she had failed the test.
Sarina lost a tooth, she has been wiggling it for days. We told Sarina about the stomach scope, she has been worried for days about the belly pain. She is very nervous, but taking the news of the scope well. We took all three girls to build-a-bear today. Sarina and Elizabeth made a rabbit and Breanna made a pink poodle. Then they took a ride on a merry-go-round, so we had a good day.
The news says more snow tomorrow. Can be up to a foot, AHHHHHHHHH!!!! I want Spring Now Please!!!!!! Just hope that the snow is drivable and I don't have to cancel the scope. Keep Sarina in your prayers and thoughts please.
Heather
Thursday, February 24, 2005 3:24 PM CST
Thanks for checking in on Sarina, she is having lots of stomach pain. She missed school today because of the pain.
Right now it is snowing and they say we will have 8 inches by the morning. I can't wait for the spring.
Sarina has her stomach scope and biopsy on Wed. The day before will be hard for her, no food for 24 hours and she has to be cleaned out. She does not know about the scope yet, I don't want her to spend the whole weekend upset.
Heather
Thursday, February 17, 2005 3:47 PM CST
We now have a plan. I finally spoke to the head of GI at St. Chris. He agrees that a g-tube is not needed right now. We have set up the scopes and biopsies for March 2th. He will be the one dealing with Sarina from now on. I liked him a lot. He took time and listened to me. The only thing is that he thinks Sarina might have Cystic fibrosis so we have to set up some test for that.
Heather
Monday, February 14, 2005 8:22 PM CST
Sorry in advance, this is part update and part rant.
In a nut shell we saw the stomach DR today. I went in knowing that they most likely would have to do a scope. Well I was hit with the fact they want to do a scope, biopsy and want to place a G-tube. That would be a feeding tube surgically placed in her stomach. So the JERK of a DR talks in front of Sarina explaining in graphic detail what this means. So the poor kid is upset and who can blame her. The DR forgets to mention she will not be awake as he is telling her about cutting into the stomach.
So I am upset, Sarina is upset and I am 100% confused. I asked some questions, but to be honest did not ask enough. He feels that the feeding tube is the reason she is not gaining. That it is irritating the inside of the throat and has given her a food aversion. I never said she will not eat, just she dos not eat a lot and complains of stomach pain. The whole reason we are there and the pain is never talked about. He feels we remove that tube, place the G-tube and give her feeding therapy. He is also talking like this is a long commitment of time, years.
Anyway he has me sign consent and will set up the surgery. He also claims not to have the blood work done from last week and tells me a PET scan can not show inflammation only a biopsy can show that.
So nurse comes in to set up date and I decided I need more time. I wonder if we can do scope only. Well she gets pissy and acts like I am a bad mom. I mean if I don't let them do it together then I am putting Sarina through two different surgeries.
So I agree to get her blood work and checked out for the operation, but am not sure what they are doing or when. So off to oncologist office. Turns out blood work had been done and faxed over to the other office and the PET says in black and white inflammation.
Well, now oncologist thinks g-tube good idea, nurse practitioner does not. My head is swimming.
So they do a few more blood test, get her check at the SPU for the surgery. Go home and call GI DR office. I need answers to lots of questions before I say OK. So I am still waiting for a call back and have no idea what to do. I want to scream very loud right now.
Heather
Thursday, February 10, 2005 4:41 PM CST
Sarina was able to go to school today. She does have a infections and has started some new medication. It does seem to be helping with the back pain. Her stomach does still hurt.
We see the stomach DR on Monday and hope to know more then.
Heather
Monday, February 7, 2005 7:26 PM CST
Well not happy Eagles fans here, but they did give it there all and there is always next year.
Quick update... Sarina has been under the weather and not eating much. Lost a pound since last Monday. She is having back pain so they did tests to see if she has a bladder infections, will know in a few days. We see the GI DR next Monday and will set up the scope.
Heather
Wednesday, February 2, 2005 4:42 PM CST
We have the PET scan results for Sarina. The scans were clean, YEA!!!! Thank you for all the kind words and prayers.
The only thing is that the scan showed was a mass of inflammation. They think this is the weight gain problem. We are trying to get into a GI DR and set up further testing.
Heather
Monday, January 31, 2005 6:20 AM CST
We had the PET Scan and hope to know something by the end of the week. It went well. Sarina felt some pain after since she had to lie on her back with her arms up for so long.
GO EAGLES!!!!
Wish us luck, we are off to the PET Scan this morning. Sarina is still having stomach pain and was so tired yesterday.
Heather
Wednesday, January 26, 2005 1:59 PM CST
The Pet Scan will be on Monday.
We had to cancel PT this week do to the snow so Sarina is having some leg pain. The new stomach medications do not seem to be helping, but the DR said to give it a week so we will see.
Please pray for a clean PET Scan.
Heather
Sunday, January 23, 2005
The snow has come. We have a bout a foot on the ground and some more still to come. The girls played outside a little yesterday. Sarina can only last about 10 minutes in the cold, but they had fun.
Sarina and Elizabeth saw Frog and Toad at a local theater on Friday as a class trip and had a good time.
Heather
Thursday, January 20, 2005 Sarina saw the oncologist today. She gained a few ounces back, but is still far off the weight she was before New Years. So he is putting her on 2 new stomach medications and we are to increase the length of the feeding machine time. We did blood work and her counts were a little off, I have to call back tomorrow to get all of the test results. He wants her to have a PET scan within 2 weeks and then we will decide what is next. I should have the date of the PET by Monday.
Please check out the new photos. The girls are modeling there new cool dance outfits. We want to thank Connie and Madeleine for sending them to us.
Heather
Tuesday, January 18, 2005 4:30 PM CST
Sorry been so long since I updated. Sarina is much better. She is even back to school. We see the DR on Thursday. I am not sure if I want to see how much she now weights.
Heather
Monday, January 10, 2005 3:25 PM CST
Hello all,
Sarina is a little better. She even ate some soup today. We saw the DR and Sarina was put on two new medications to help get rid of the infection. She has a little more energy today and is tolerating the formula through the feeding machine.
Heather
Saturday, January 8, 2005 7:05 AM CST
Sarina still has her cough. She is now not eating or drinking at all for the last two days. She was sick to her stomach and did throw-up some, but is refusing to take anything by mouth. So she is on a 24/7 fluids by the feeding machine. If not better by Monday she might have to go into the hospital.
Breanna is over her pink eye. Elizabeth was not feeling good the other day, but thankfully seemes better today.
Please keep in your paryers two close adult family friends. One is having heart surgery on Monday and the other is waiting for a biopsy results.
Heather
Monday, January 3, 2005 7:11 PM CST
Well,
Not a great way to start out 2005. Sarina lost over 2 pounds since pulling the tube on Thursday so it is back. She also has a lung infections right now. So she is out of school and doing breathing treatments every three hours. After the infection is gone we will see the GI and set up the stomach scope.
Also Breanna has pink eye right now.
Heather
Thursday, December 30, 2004 4:10 PM CST
Quick update on Sarina. Her growth hormone test was normal, one level was low, but they are not worried. Will repeat that blood work in a few weeks. The DR has labeled Sarina "failure to thrive", no idea what that means. Wants her to see a GI DR and have her scoped.
We saw the oncologist today, all blood levels are within normal limits and she gained over a pound in a half, big standing O. So he pulled the feeding tube to give her a break. She is still doing a happy dance. We will check weight on Monday, please keep everything crossed she does not lose any weight. If she is the same or has gained more weight we get to burn the feeding tube. If she loses weight the tube goes back in and we set up the scope.
Hope you all have a healthy and happy new year.
Heather
feel free to sign the questbook we love to see who popped in.........
Monday, December 27, 2004 10:07 PM CST
Hope everyone is doing well and relaxing after the holiday season.
We are doing well here. Still waiting for the test results from the growth hormone test Sarina had last week.
I was in a minor car accident last Tuesday. I am OK and so is Breanna who was in the car with me. I am having some pain, bruised the coller bone, but nothing else thankfully. Now I have to get the van fixed. Worst thing is that it was a hit and run, can you believe it?
Sarina is doing good. We have a weight check-in on Thursday so we will see.
Heather
Friday, December 17, 2004 2:20 PM CST
I am going to get the girls filmed devolved over the weekend, but they came home with an photo album of pictures and I put my two favorite in the album, check them out.
Also Sarina had an DR visit on Thursday. She gained just over 2 pounds YEA!!!!! She has a test on Monday to see if she has a growth hormone deficit. Keep all your fingers crossed.
Thanks to Lauren for the card and gift for Sarina and Elizabeth they loved painting them.
Heather
Monday
Sarina had her Growth Hormone test today, should know something in a week. This was just part one and it took forever, but she was great.
Sarina and Elizabeth won an award at school today...Good Citzenship Award. I am so proud of them both.
Heather
Sunday, December 12, 2004 9:43 PM CST
Sarina and Elizabeth are off to Disney. They have already called home twice and are doing well. I have added some pictures of them in the airport before they left.
Heather
Saturday, December 11, 2004 6:40 AM CST
So far Hanukkah is going well. The girls are enjoying the presents from the family. Sarina is having leg pain due to the weather. So far she is doing well with the increased feed time. We will see the DR on the 16th and see how her weight is.
Elizabeth finally qualified for her high white belt in Karate last night, she is very excited. Sarina received hers almost a month ago.
Sarina and Elizabeth leave for Disney very early tomorrow morning. They can't wait. I have to go finish packing.
Heather
Thursday, December 2, 2004 7:27 PM CST
Hello,
Sarina is doing well. The DR is concerened that she is not gaining any weight. We are going to try and up her feeds and hope that helps.
We are geting ready for Hanukkah, it starts Tuesday and the girls can't wait. Sarina and Elizabeth leave for Disney on Dec. 12th, they can't wait.
Heather
Wednesday, November 24, 2004 7:50 PM CST
HAPPY THANKSGIVING!!!!!
Sarina is still holding her own. No weight loss in a week, but no gain.
She has a mild lung infection so she is back on the breathing treatments. I think we caught it early and pray that it does not get worse.
Heather
Friday, November 19, 2004 2:49 PM CST
Thanks for checking in on us.
Sarina gained 2 ounce since her last app. with oncologist two weeks ago. She had to have her ENG tube replaced, she hates this.
Sarina is still having stomach pain, if not better by Monday we have to go back to the oncologist and see what is up. They are hoping she just has a stomach bug.
Heather
Monday, November 15, 2004 8:33 PM CST
Well,
All three girls had their yearly check-up. Here are the results:
Sarina is 44 1/2 inches and 44 pounds 5 ounces. Elizabeth is 45 1/2 inches and 56 pounds 5 ounces. Breanna is 33 3/4 inches and 24 pounds 1 ounces. All are doing well. They are growing up fast.
We see the oncologist on Thursday. Sarina has been having some stomach pain. We have decided to do the growth hormone test. We will break it up in two parts. The first part will be on Dec. 20. We are hoping that this will be the answer to her lack of weight gain.
Heather
Tuesday, November 9, 2004 4:20 PM CST
Finally the PET scan results came in and everything is 100% clean YEA!!!!!!!! Finally spoke to the growth specialist and she wants to do this long involved test to see if she is indeed growth hormone deficient. Not sure I will do this. Sounds very involved.
Sarina and Elizabeth had a great 8th birthday.
Heather
Friday, November 5, 2004 6:02 PM CST
I guess no news is good news. Still no word on her PET scan. Hope to know something next week. She has not lost weight, but no weight gain in 2 weeks. The growth specialist is also dragging her feet. She wants to do further testing, but claimed that she never received all the test results. I personal faxed them to her office this week and left two messages and still nothing.
On the good news front, the organizations that sent Sarina and Elizabeth to overnight camp this summer is taking them to Disney for 4 days. Usually they only take the "special" kid, but they are allowing Elizabeth to go with. They should have the counselors they had from camp. They will go the last few days of Hanukkah. I can't tell you how excited they are.
Sarina and Elizabeth will have a bowling party on Saturday. They turn 8 on Monday.
Heather
Sunday, October 31, 2004 10:31 PM CST
HAPPY HALLOWEEN
The girls had a happy Halloween. Sarina did a little too much and need some pain medication to get to sleep.
We hope to have the CAT and PET scan results this week. The endrocoligst (sp?) said the bone test showed a delay in Sarina's bone growth by 2 years and needs the rest of the blood test results to decide what the next step will be.
I added a new picture of all the girls at Halloween. And the new one on this page of Sarina as a Rock Star.
Heather
Thursday, October 21, 2004 7:50 AM CDT
Hello,
We had a long day on Monday, but it turned out good in the end. Saw general surgeon who felt it was not a cyst, but she needed to see a neurosurgeon NOW. So he personal walked us to the neurosurgeons office and made sure we were seen that day. After a long wait the neurosurgeon feels that it is nothing after all. He thinks that it is nothing to worry about unless the spot gets inflamed or she spikes a fever. He will check her last MRI and see if he sees anything. He will call if any red flags come up. I feel so much better.
We had the CAT scan on Tuesday and will know something we hope by Monday. The PET scan is next week. Sarina gained 2 pounds YEA!!!! She is having leg pain, we think it is due to the colder weather.
We found out that a good friend at the hospital has relasped, please add Patrick to your prayers, his family and him could use them.
Heather
Monday, October 11, 2004 10:05 PM CDT
What a day we had. We saw the specialist and she thinks her thyroid might be off, but that has nothing to do with her not being able to gain weight. The DR is also worried about her small height and thinks she might have a growth hormone problem. So we need to do some test to see about that.
Then we saw the oncologist. We had stopped her feeds last Wed in hopes that she would maintain her own weight and we could say goodbye to the feeding tube. She lost weight so the tube stays. Also she was born with a dimple on her back at the end of her spine. Last week I noticed an extra something from the dimple. Turns out that it is a cyst and it must be surgically removed. He is worried that it might be attached to the spine and will have to keep an eye on it. I will set up a consult with the surgeon tomorrow.
Heather
Friday, October 8, 2004 1:01 PM CDT
Hello,
Sarina gained 2 ounces, YEA!!!!! The DR feels it is time to decide what to do next with the feeding issues. The ENG tube was going to be temporary, we are going on over 2 years with a few months off that did not work. So we are not giving her any feeds for five days, just what she eats. Then we see a specialist on Monday and then the oncologist. As long as she does not lose any weight we will pull the feeding and watch her. If she loses then we need to talk about a more permant solution.
Today is Breanna's 3rd birthday so we have a busy weekend ahead of us.
Heather
Monday, October 4, 2004 8:39 PM CDT
Hello,
Well, we had a great Light The Night walk on Saturday. Beautiful weather and lots of people. Sarina was so happy and walked a lot of it, YEA!!! She did need her stroller at the end, but way to go.
Sarina is having some stomach problems so we will see the DR on Wed. Elizabeth had her yearly Kidney ultrasound and all is well.
Both Sarina and Elizabeth have art work on this site http://www.scribbleskidsart.com/generic2.html so try and check it out.
Thanks for checking in on Sarina.
Heather
Wednesday, September 22, 2004 7:29 PM CDT
We made the local paper. The Northeast Times did an article on Sarina and The Light The Night Walk we will be doing. Here is the article:
Sarina’s Survivors ready
to walk the distance
By Elizabeth Stieber
Times Staff Writer
Sarina Smith is ready to go the distance.
In some ways, she already has. The spunky 7-year-old from Oxford Circle is a cancer survivor who endured the obstacles, including painful chemotherapy treatment, losing her hair and a slight limp.
Regardless, she will be walking for a cure for her cancer, Hodgkin’s Lymphoma, and other blood cancers.
And she’ll be surrounded by plenty of family and friends.
More than 30 of Sarina’s Survivors will walk in the Leukemia and Lymphoma Society’s Light the Night Walk, a two-mile, non-competitive, fund-raising walk scheduled for Saturday, Oct. 2, at Penn’s Landing.
About half of those walking will be children, including her twin sister Elizabeth and her young cousins.
This is the second year Sarina’s family has participated in the walk.
"It’s very family oriented," said Heather Smith, Sarina’s mother.
In August 2002, Sarina was diagnosed with Hodgkin’s Lymphoma, a blood cancer that is uncommon in children. She spent a lot of her time at St. Christopher’s Hospital for Children receiving chemotherapy.
"The news itself was devastating," Smith said. "It affects the whole family."
Luckily, the family came together to support Sarina and her family — parents Heather and Brian and sisters Elizabeth and Breanna.
"We always had someone to watch the kids so we could watch her," she said.
The J. Hampton Moore second-grader’s cancer is in remission now. She still has a feeding tube, and she tires easily, but she is improving.
Recently, doctors removed Sarina’s leg braces, which she had to wear because the cancer caused her to develop a limp.
Last year, Sarina wanted to raise money to help other kids who have blood diseases.
"She has a great attitude. She still does," said Sheila Evans, Sarina’s grandmother.
She wanted to go door to door to ask for money, but her mom found a Light the Night Walk flier and suggested participation in the fund-raiser.
Light the Night Walks happen in cities all across the country. Participants form teams and raise money on their own to come up with the registration money. Often, they raise much more.
Last year, Sarina’s Survivors raised $2,000 with a team that was organized at the last minute. This year, the team is more organized and is hoping to surpass that amount.
During the twilight walk, participants hold illuminated balloons. Survivors hold white balloons and supporters hold red balloons.
"It’s nice when you see other people who are going through it or who went through it because you know you’re not alone," Smith said.
The Smith family is proud that Sarina can carry that white balloon.
"It’s a way of saying ‘She made it,’" Smith said.
Despite still facing challenges, Sarina is ready to conquer this year’s walk.
"It’s a long walk, but I like doing it because last year I had (leg) braces and I still walked. I almost walked the whole thing," Sarina said.
"I’m planning to go the whole two miles." ••
The Leukemia and Lymphoma Society Light the Night Walk will take place Saturday, Oct. 2, at Penn’s Landing.
Registration is at 5 p.m.; the walk begins at 7 p.m.
For more information, call 610-521-6132 or visit www.lightthenight.org
Reporter Elizabeth Stieber can be reached at 215-354-3036 or estieber@phillynews.com
Monday, September 20, 2004 9:40 PM CDT
We saw the oncologist today, Sarina is much better. No weight gain, but no loss. Lungs are nice and clear. The DR thinks she might have exercise induced asthma. So we will give her breathing treatments before anything physical. If this helps we will start her on some new medication.
Also they did blood test and they said that all but her measles vacations are out of her system. So she has to get all her immunizations again.
Friday, September 17, 2004 6:51 PM CDT
Yesterday and today was Rosh Hashanah. Sarina was upset that she was unable to go to synagogue since she still has her cough. She will see the DR on Monday. She is still not doing a lot of eating. I have added pictures from the other day.
Update on my nephew: He came home from the hospital today. He is doing OK. They had to keep the PIC line in and he will get IV medication at home. He will see the DR and have an ultrasound on Thur. They hope to remove the PIC then and set up the surgery.
Heather
Monday, September 13, 2004 7:37 PM CDT
Well,
This is one of these good news bad news journal days. Sarina broke one of her leg braces and went a whole day not using them, besides some leg pain and being tired she did great. So the GREAT news is we decided that she can go brace free for now....YEA!!!!!!
OK the bad news, she lost a pound, yes a whole pound since Friday. Her cold has moved to her lung. She is out of school till further notice and on breathing treatments. The DR is hoping this will prevent it from turning to Pneumonia.
Update on my Nephew Dylan: He had a PIC line placed today. They had a hard time with it and had to move it twice. He is sore, but doing OK. He is starting to eat and they will do test at the end of the week to see when they will operate.
Saturday, September 11, 2004 8:56 PM CDT
GREAT NEWS.....the PET scan showed nothing....Sarina is still cancer free.
Right now she is battling a cold which we hope does not move to her lungs.
On a side note my nephew, Dylan is in the hospital. He is four and his appendicitis burst. They have him on IV antibiotics and will talk about operating the end of the week.
Heather
Wednesday, September 8, 2004 6:25 AM CDT
Hello,
Sarina and Elizabeth had there first day of second grade. They like their new teacher.
Sarina was very tired after school, but did well. We had her fitted for her new braces. Now we have to wait to see if insurance will cover them.
Sarina had to get her feeding tube changed yesterday and that is always not a good thing for her.
The GREAT news is that they were finally able to read the PET scan films and feel that it shows nothing. She is still cancer free.
Heather
Friday, September 3, 2004 3:56 PM CDT
Thanks for checking in. Sarina had a busy day today. She had PT and we are thinking of changing her leg braces so they will not be as far up her leg, YEA!!!!
She had a hearing test and it is the same, no more hearing loss.
We did a weight check also, no gain, but no loss either. Over all good day.
Sarina and Elizabeth start school on Tuesday.
Look at the new picture of the girls.
Heather
Friday, August 27, 2004 10:19 PM CDT
Sarina is doing well. We saw the oncologist today for a weight check. She gained a little weight and looks good. We are still waiting for PET scan films to be reviewed. The scan showed something in the stomach area and we are waiting to see what they feel it is.
Heather...Sarina's Mom
Thursday, August 26, 2004 5:07 PM CDT
Welcome to Sarina's Web Page. It has been provided to keep people updated about Sarina and her sisters. Thank you for visiting Sarina's brand new page. I am new at this so please be patient with me.
Sarina and her twin sister Elizabeth were born 11 weeks early. Sarina faced some early medical challenges. At the age of four a lump on her neck was found. After many biopsies, tests and specialists and 2 1/2 years we discovered the lump was in fact cancer. Sarina was diagnosed with Hodgkin's Lymphoma stage 4B. She started chemo in Aug. of 2002. Now we are happy to say she is in remission, but still suffers from some medical issues. She has a small heart defect called ASD; mild CP that she wears leg braces for and Scoliosis. Sarina also has some hearing loss from the chemo and Raynaud's Syndrome. Sarina is still having weight issues and has a feeding tube to deal with these issues.
I will try and update this site often so feel free to stop in and sign our guest book.
Heather...Sarina's Mom
Kindle check out these sites:
BECKY BUNNY
BABY HARLEY
HAPPY MAIL PROJECT
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
** Also if do this SARINA
when sign Gbooks it will link back to your site.
Wednesday, August 25, 2004 8:07 PM CDT
Welcome and thank you for visiting Sarina's brand new page. I am new at this so please be patient with me.
Sarina and her twin sister Elizabeth were born 11 weeks early. Sarina faced some early medical changeles.
At the age of four a lump on her neck was found. After many biopsyies test and specialist and 2 1/2 years we discovered the lump was in fact cancer. Sarina was digonised with Hodgkin's Lymphoma stage 4B. She started chemo in Aug. of 2002.
Now we are happy to say she is in remession, but still suffers from some medical issues. She has a small heart defect called ASD. Mild CP, she wears leg braces for and Scoliosis. Some hearing loss from the chemo and Raynaud's Syndrome.
Sarina is still having weight issues and has a feeding tube to help with that.
I will try and update this site often so feel free to stop in and sign our guest book.
Heather...Sarina's Mom
Click here to go back to the main page.
----End of History----
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