Thursday, September 30

Prayers needed!!!

Last night Regina got admitted with 39,6 fever. VERY high. Now we are inpatients again until her situation gets stable.

She scrached her head about a week ago and her nail was little to long and she scrached tooo hard. Now one spot- where her scarline is is infected . She got antibiotics last night and everything was fine. Then around 12 am she got antibiotics again. Suddenly she woke me up and sayed" Mom, I need to go to bathroom. SO i took her. She felt really warm. I turned on the light and my girl was swallen all over the body. The worst was her tummy and face. Imagine about 200 mosquito bites. Thats how she looked. I rushed out from the room and called her nurse in to see what is going on. I was scared. I was. I had no idea what was going on. They told me that it is because of antibiotics. And it happens to a lot of the kids.
Nurse gave her some benadril and after hour her itchy , red swollen patches where gone. But oh, boy was I scared.
And that is not it she also had 38.8 fever. Fever went down also.

Then this morning she got the same meds again and nothing happened. They told me that instead of giving it to her one hour, today they will do it for 2 hours.

I also found out what was the reason of reginas fever. SHe has infection in her white line. They dont know what kind of infection but good thing is that it was cought in very early stage so no real damage is done. I just hope that it is not because I did something wrong :(

Now we wate and hope that fever will go away, that infection will clear up and little infection on top of her head will dissapear fast.

And please send some good apetite vibes. She is hardly eating. And she is just skin and bones( 14 kilos). Tonight she will get some Tpn fluids( carbs, protein, vitamins) to keep her going and if she still keeps loosing she'll be on steroids.

OK. I finally got my internet connection here in Target house - but sad part is that I dont get to use it because we are in hospital. :)


Monday, September 27


Target House II
1811 Poplar Avenue
Memphis , TN, 38104
ROOM 518

Diana and Regina Tan
ALl the letters , packages and get well cards can be sent to that address. :)

We live in target house now and we love it. It spacy 2 bedrooms, little kichen and little living room. Enough space for 3 of us

And thanks to familyes who lived there before we have everything- pots, pans, forks, spoons, cups, coffee mashine, can opener, blender, etc. :)
Regina is not doing very good. SHe still throws up a lot( every time she eats something), she is eating way to little . ANd she gets headaces.

Today her ANC was 0 and her platelets 14 so today we will spend lot of time in Medicine room. SHe feels hot, but termomiter shows no fever.; She cryes a lot and complains aces here and there and seems like all she wants to do is lye down- even if she feels better.

On wednesday I'll get high speed internet in our room( 30 dollars per month+ 450 dollars for needed equipment.) SO hopefully I can check in more often and give better updates.

Regina HATES wearing her mask. She will cry 5 minutes before she buts it on. Who does not know what the deal about the mask- since her counts are low or 0 she has to wear one and it helps to filter out viruses, bacteria, fungus- whatever is flying aroung in Memphis.

We also have to wash our hands 100 times during the day- my hands are dying . I swear. Water 100 times a day is hand kill. lol I need good lotion recomends- and possibly without any scent. Regina is very sensitive to aromas( I even can not shew minty shewing gum) .

Thursday, September 23

1 down, 3 to go.

Yep!! 1 part of her chemo is done. But next 3 treatments will be little easier. next ones are stem cell transplants.

She stopped peeing blood around midnight . So she did not have to wake up every hour anymore to pee in to the cup.
We just got discharged and now are back in Grizzly house. And we got some great news. WE HAVE A ROOM !!!!! YES!!! Tomorrow I have to go to Target house to do the orientation thingi. lol. After that we can move in there. So next 4-5 months we are Target house family.

Regina is one weird girl with even weirder apetites. She asked me to make barbeque toaster strudels. Which means I take to slices of white bread, smear barbeque sauce all over the bread and then she will eat it. YAIKS. Once before she asked this from me and she had horrible diarrhea for 2-3 days. SO today I bought the mildrest barbeque sauce and made it for her. ANd guess what. She only took wone bite out of her sandwich. lol

She is doing ok overall. Hopefully her normal apetite will return soon. And cross your fingers that she will not get fevers. Usually most of the kids get fevers when counts drop.
SHe is not that stinky today. But everytime she passes a gas I can smell the bonemarrow preservitive all around our room in Grizzlies. lol

Wednesday, September 22

Regina got her bonemarrow back.

Today around 11 am she got it back. She did really well first 2 hours. No vomiting no pain, only feeling she had was COLD( her bone marrow was brought in frozen, they defrosted it inside the hot water and injected it while it was ice cold. Right away I could feel this horrible smell. SOme prescribe it as corn some as burned popcorn but for me it smelled like fresh , raw pork or chicken. The smell is still really bad in the room and it'll last for a while.

Around 1.20 she started throwing up . And around same time she started peeing blood. Doctors say it is normal that it is happening. SO I must belive what they say.

Suddenly she started screaming and holding her head. "Mommy, mommy take the pain away.Mommy , my head hurts, take the pain away.ALl I could do is to watch her to cry and hold her hand. Doctor' nurses gave her some meds and pain stopped and she fell asleep. But all the bad memories came flushing back. The days she was trowing up,the days she was just lying down and doing nothing, The days she was crying and asking to take the pressure away. I felt like it was happening all over again. I could not help it. She is now the way she was while sick at home with tumor and we had no idea what was wrong.

Now she i crying because she is getting help. SHe is throwing up because meds are working , she is crying because she is feeling pain because of meds, not because she had life tretening tumor. Hopefully she will feel better tomorrow.

We still dont have room in Target house. I think that people in Patient services just are telling me what I want to hear- which is, we want to get a room NOW. i heard this "you get your room withing next 2-3 days " for almost 3 weeks now. Is that normal. I NEED ROOM NOW. With reaginas situation it is better for us if we move before she gets discharged.


Tuesday, September 21


Today is the day she is suppose to rest. She is still not eating and feels bad. Yesterday she had bad tummy pain and they gave her some meds that made her tummy really gassy. Tomorrow she'll get her stem cells back and thursday we are out of here.

Nurse finally agreed with me that there has to be done something about her antibiotics. SO instead of taking them every day twice for needed period , she got them through IV line. And next dose she'll get next month. THANK YOU!! I felt so bad her thowing it up every time she even smelled the meds.
Now she throws up everytime she even does her mouthcare( moutwash and some meds to keep her mouth getting sores). Today she complined that her mouth hurt. :(

I just want her to start eating.

Monday, September 20

Regina is still not eating much. :(

ANd she is getting weaker. She is not able to keep her oral medications down. She threw up today 5 times allready. :( I dont know how am I supposed ot feed her meds for 10 days if she is not keeping it down?? ANd I'm not really liking todays nurse. She is just weird. I told her that regina has problems with cherry flawored meds - and guess what she did. SHE have her cherry flavored meds- she had choice betweens strawberry and cherry but no she gave her cherry. And she even offered her to have some peanut butter crackers.

Sunday, September 19

And Birthday is here. :)

We did get her cake- There is no birthdays without cake in our Family.
She did not want to eat it :(

She is doing really good. Today she is only getting 2 drugs and she is dolerating them really well :)

Saturday, September 18


It is not 19th yet but it is soon :) My sweet girl will be 5 years old tomorrow. I can not belive that 5 years has passed . TO fast :( HAPPY Birthday, and we promise we will not spent your next B-Day in the Hospital.
I asked what she wanted for her birthday and she told me that she wants to have some kind of talking Panda Bear. I have no idea what she is talking about but if I find it- ONE day, I'll get if for her. AND GUESS WHAT- she wants to have big red dog- BUT not any red dog. It has to be real and it has to look like Clifford( we have 3-4 toy cliffords). I don't know where she gets these Ideas from . NOT FROM ME!

She is doing lit

Day 1

She is finishing up her last dose for today( worst day out of 5 days). She is doing really good. Sleeping most of the time . She threw up once but doing great.

Friday, September 17


Finally!!! LA lalalalal. Can you tell I'm happy??? HA!!! We GOT A ROOM!! We got a room!!!

YES. REgina will be inpatient starting from tonight! What a relief. I'm so happy that her schedule stays almost the same.

AND- sometimes next tuesday ( I HOPE) we finally move out from Grizzlies house and into TARGET HOUSE!!!! What a great day!!!

She'll be hooked up with IV fluids tonight and tomorrow(fingers crossed) if docs think she is ready to get her first dose- SHE WILL GET IT!

Thursday, September 16


WE are not going to be admitted today!!!!! GRRRRR!!! There is not enough bed spaces so we have to wait 1 or 2 or 3 days before they can admit her and start with chemo. IT MEANS we have to stay here longer. I'm mad .

Tuesday, September 14

We are all set!!!

Today we had last set of checkups and tomorrow we have "free day".

They got enough bone marrow for first round of chemo. After first round chemo she will have to go true stem cell harvest to get enough stemcells for rest of the chemo.

Monday, September 13

I'm scared now.

Right now, at this very moment, Regina is lying down on operating table and doctors and nurses are working hard to get enough bone marrow for at least 3 doses. I saw the room and equipment and it scared me how much was going on in that room. Hoses everywhere, big mashines... Everything will go well. She told me she'll be strong and she will.

Before surgery we spent 2 hours in waiting area( we supposed to sign in 2 hours before surgery started) , and we laughed the whole time. I havent seen her that happy for a long time.She laughed about everything. I wish there were more happy moments like that. There will be , I just know.

But right now I'm just trying to get myself together and stay strong.

Nick and SIja have another 700 miles to drive. They will be here late tonight.

Everything went well :) I don't have all the details but seems like surgery was a success. REgina is doing good. After she woke up , she asked if she can eat chicken. Nurses told me to start with water and soup but she did not want any. So I gave her some chicken. She ate her lunch and now she is sitting next to me in her Jeep stroller. She says that she is not feeling any pain yet.

Nick called- They will be here in 2 hours. They were speeding and driving to close to somekind of big truck. COps were driving behind them and pulled them over . They said to him that he should be more careful. And this time they got away with warning. HONEY!!! WHAT is it with you. Every time you drive my car you get inot some weird cop situations. :)

Sunday, September 12


Nick and SIja( my sis) drowe 800 miles yesterday. They are somewhere in Oklahoma now. Hopefully they will be in Memphis tomorrow night. :):) Can not wait to see them . And good thing is that I get some one on one time with my Dh before Regina starts her Chemo.

We spent 2 hours in hospital today. Just everyday stuff- blood checked, temperature, blood pressure. Same old, same old. But today we did it in Medicine room. We never been in Medicine room before.

I think I lyed littlebit in my last post. I said Regina will be admitted on Friday( ups) , she will be admitted on Thursday. I just read my callendar wrong( I still get European/ USA callendar mixed up sometimes). In Estonia week starts with Monday, and in USA it starts with SUnday.

Think about her tomorrow. :)

THank you for prayers and well wishes. :D

Saturday, September 11

Busy schedule ahead..

REginas MRI's were clean!! Is'nt that the great news??? I saw her MRI results and her brain looks flawless :) CLEAN!!!!

But we have really busy and nerw wracking schedule ahead. SUnday we will have to go to hospital to get her labs done .

Monday she will have bone marrow harvest done- it takes about 1-2 hours .
What it mesand is, donor will receice anesthesia so she'll be pain free. And she will have no memory of the procedure. During the harvest procedure , 2 sites, 1 on each hip , are accesed with the collection needle. The needle is inserted several times throught these 2 sites until enought marrow is collected. The harvest is done in the operating room under sterile conditions. The marrow is saved for her to use at a later time as indicated by our childs treatment plan.

This is our first step before chemo. If they dont get enough marrow , she will have second line placed in her groin area and this time mashines will do it's work.

Think about her. She will feel great discomfort and pain for a while, but since she is so young she will recover fast. Infection risk is really big. Hopefully doctors do theyr work really well and she will have no complications what so ever.

Tuesday's schedule is BUSY.
starting from 8 am to 4 pm, she has various apointments. Starting from X ray and ending with e clinic( about 7 apointments total).
Wednesday again, busy, busy, busy, . Thursday - I'm not sure what will happen. But FRIDAY, the 16th is THE day. SHe will be admitted 7.30 pm- and we go from there. Saturday she will receive her first drugs. Pray for her. :)

Thursday, September 9

And we are in Memphis again.

It is our 3d day back. Yesterday she had O/T , and A/T . She had cbc , full chemistry, blood clotting tests done. THey needed to poke her to get blood( for clotting test). They did it 4 times because her veins were not co-operating. She screamed the whole 20 minutes the tryed to get blood out. :(

Now she is getting her MRI done( head and spine). Hopefully tumor shows no signs of growing back . Pray!!!
after this we will see doc Gajjar and then we are done for today. :) So hopefully arond 2 o'clock we can go back to Grizzly house and rest rest of the day.

Sunday, September 5

Birthday Party!!

Regina and H had their part yesterday. It was fun party. :) Regina was not feeling very well yesterday so she really did not participate with enthusiasm. She look somewhat pale and I thought that something was wrong. I had little talk with her and she said to me that she is sad because this party is not ALL about her :( She and her best friend celebrated party together. And also told me that there is to many adults and she is scared of them :(.

She is realy shy girl and she is not stupid girl. She feels like she is starting to grow apart from her friends and thinks that she has no more friends :( That just broke my heart. But I had to but on my party face and stay strong.
H. Mom was nice enough to notify party stuff so they would set 2 sets of candles so the girls can blow off candles individually. Regina went first. She told me to do it for her . I blew the candles and made a wish. :) You can guess what I wished for :)

Thank you Beth for being so understanding :)

She got lot of presents and she has been playing with her presents all day today. She is back to her normal self and is singing and dancing around the house. She was playing my keyboard and gabriel was singing and dancing, then it was gABRIELS turn to play and Regina was sihnging and dancing. They are just to cute.
Regina is trying to tell me that SHE NEEDS Gabriel in Memphis and It is fun there . She appears distant when I tell her about going back to memphis. But she is ok going back there.

I dont know when I get a chance to update . We are leaving on Tuesday and get settled in Grizzly house. Hopefully we get placed to Target house really soon. I dont mind living in RMH but it just drives me grazy that I have to share kitchen with eveybody and if I want to eat I have to get my self into "ok " clothing to go down and fix up my meals and even then if there are people in kithen I have to wait until they are finished. Oh, well. We'll see. :)

Wednesday, September 1


I really have no Idea how many of you are reading our ST JUDE story. IF you get a chance just post a comment here and let us know that you are out there and thinking about us. It'll mean a lot to us all :)

Diana , Regina, Nick and Gabriel

Busy weekend ahead..Part 2

Ok, here I go again. Blogger deleted my post before so now I try to say again what I itended to say before.
We have really busy schedule from tomorrow till Monday.
Tomorrow( thursday)- I have to buy gifts to 3 of our friends. Reginas Best friend H. is coming over and they will have sleep over together. Before sleepover starts we will go to my Best friends son J. birthday.
Then on Friday I have to clean up our house.
Friday Morning Nick will come back from china
Friday night our friens will come see Regina and Me last time before we leave
Saturday Shopping in Costco and from 2-4 is Princess tea party. Regina and H. will celebrate theyr B-days together. And thanks to H. mom this B. day will be memorable for both of them. Thanks Beth!!!
Sunday- I'm not sure yet, but I know we will do something
and Monday- Packing and crying and packing and crying. It'll be really sad day. :(
And we'll say by to Ca for 5 months 9am on tuesday morning.
We receved our ticets today. I felt like crying. Step no2 is getting close.
It'll be long road to recovery but SHE is strong and she can do it. She has to do it. It is to late to turn back now.
She will suffer during the treatments, and she will be in great deal of pain, but if it gives her longer life in this unfair world , why not to but her through that. We love our girl and she is special to us in many ways. She is very much loved and needed in this world.
I want to thank you ST Jude for giving her second chance in life.

I'm really sad about not being able to take my son with me to memphis. :( My husband will stay to CA with Gabriel- he is 3 years old. I will miss him and I will never stop loving him. I will see her during the thanksgiving and Christmas but that is about it. I dont know what will I do without him those 5 months away from home . And of course my dear Husband. I will miss him also. :(
My sister will come with me to Memphis to help me out. I think I COULD handle it alone, but little help does not hurt. Thanks Sija for coming tu USA to help us . She is our only relative in US now. My husbands family is in CHina and my family is in ESTONIA, so we really have nobody here. We made some great friends but nothing replaces old friends and family. :)

Thank you everybody for praying for us and thinking about us. :)

PS- People have asked if they can share my website with theyr friends and family. YES, OF COURSE you can!! More people know about her and pray and think good thoughts the better it is. She needs everybodys support now. :)
Thank you for being there for her. :)

Busy weekend ahead.. Regina and H. Will have theyr birtday bash here
I just wrote LONG LONG POST and blogger delited it. I'm mad. I'm not in mood to write it again. :(