December 4, 2007   Hi Everyone, I have not updated in a while, so I apologize. Things have been emotionally hard for me, and for me to sit and write about what is going on is difficult.  Let me start off by saying that Kelly is doing well,.  She is using her walker almost every day and working out in the gym Gary and I have created for her in our basement.  We try to make it fun, not like physical therapy.  Kelly had her last MRI on Nov. 13th.  The results were not what I wanted, but hopeful.  The are 3 spots on her spine left.  Considering the amount of disease she had, that is impressive.  We are looking at a difference of 97%.  That in itself is impressive.  The challenge in that is the Dr.'s can not tell if the spots are scar tissue or actual disease.  With that being said, the three spots could be scar tissue and that would mean all the disease is gone.  But, with no test to determine if the spots are scar tissue or disease we go forward treating as disease.  In my mind I have told myself it is scar tissue.  I need to do that in order to get out of bed everyday.  This treatment is really taking a toll on me, I can only imagine Kelly. I cry for her pain and the hole in my stomach gets bigger at the thought of losing her as we come closer to the end of her treatment.  We only have one treatment left at the end of December.  At that point there will be an additional MRI to access the spine.  If the spots are still there, then we wait and see if they grow.  It's all a waiting game.  I came to the conclusion about three months ago, that I have no control over any of this.  I have to sit and wait and watch my daughter battle for her life.  A life that is only 5 years old.  We just got home tonight from another hospital stay for fevers/infections from the chemo 2 weeks ago.  We were there for 3 days and 3 nights.  Kelly hates being here and cries about how she wants to go home, she cries about being stuck with needles, and about taking all the "icky" medicine.  I ask everyone to remain positive and pray that the three spots are scar tissue, so Kelly and start to lead the life that all 5 years old should.  I wish everyone a Happy Holiday and will keep everyone posted on her progress of the next chemo at the end of the month.   Love, Ellen     November 1, 2007   The REAL Supergirls!!!   Just wanted to drop a quick note to everyone.  Kelly is doing very well, getting stronger everyday.  She is using her walker and getting around a little by herself.  Although she tires easily, I think she is doing great, she has a great positive outlook.  I think I tell her 20x a day how proud I am of her and to keep pushing.  She told me today she thinks all the "ouchies" are gone, we will have to wait and see.  Last time she told me that, she said she thought all the ouchies in her head were gone and she was correct.  We go in for our 5th. round of chemo next Thursday as long as her blood counts permit.  After that, our last treatment is tentatively scheduled for the same time in December. After round 4, we ended up in the hospital with fevers, but only for 4 days.  We got the short stay that time.  Kelly's next MRI is scheduled for November 12th.  Please pray for this MRI to be clear.  I will update again then.  Let's keep with the small miracles that all will add up to the big one at the end!!  Thank you again to everyone for their continued support to my family.  Without this support, this journey would be much more difficult for us.  I am very blessed to have friends and family like you, I always knew that and you all came through. The things we take for granted, that's one thing I can truly say I will not do again.   Take Care, The Malecki Family         October 10, 2007           September 23, 2007   Hello Everyone,   To update everyone quickly, Kelly and I just got home from an 8-day stay at the hospital.  Kelly started running a fever last Friday, September 14 and had no white blood cells to fight off the infection. Her last round of chemo was September 5 and her counts usually drop to 0 around day 9 - right on schedule.  If there is anything I can count on, it is the day her counts will drop.  Nothing else is predictable.  So the day after her counts dropped, we ended up in the hospital.  I knew this was going to be a long stay because she needed her counts to recover before her body would be able to fight off the infection.  Because she has such a major infection, it took her body a little longer to recover.  She had a blood infection that was pretty serious.  At one point she was on 3 extremely strong antibiotics and an anti-fungal medication.  Kelly's counts came back Friday, and we got to come home on Saturday.  Although she still has to be on major antibiotics every 8 hours through IV, at least we are home.  We go back in for round 4 on October 2nd.  One of the side effects of a certain chemo Kelly is on is hearing loss.  Unfortunately from the past three rounds of chemo, Kelly has sustained substantial hearing loss in both ears.  She has lost all her high pitch hearing.  She will have another hearing test prior to her next chemo to determine if they will continue with that specific chemo.  Good and bad.  Good because if they cut it out we can do our chemo outpatient; bad because they give the chemo for a reason - it shrinks the tumors.  In the grand scheme of things the hearing loss does not even bother me.  Small price to pay.  I ask everyone to please continue to pray for Kelly ( I know you do) and I'll update again soon.   Ellen       August 27, 2007   Hello All, Last Sunday morning we packed up and were headed back to Children's.  Kelly woke up with 103 fever.  By the time we got there and stared on IV fluids her temp went up to 106.4! Talk about panic.  Because Kelly had no white blood cells to fight off any infections, this was serious.  Her last treatment was August 7th, and her counts usually drop 9-10 days after treatment.  No surprise that the counts dropped, but the fever along with no counts is not good.  We were admitted to the hospital and blood cultures were drawn.  Monday morning, Kelly's blood cultures came back positive so she tested positive for an infection in her blood.  This was good and bad.  Good because we could treat with an antibiotic.  If this was just a viral infection, Kelly's body would need her counts to fight it off.  This was bad because any infection when you have no counts could be very serious.  Kelly was placed on 2 very strong antibiotics, but we needed negative blood cultures and no fever over a 24 hour period to make sure the meds were working.  Kelly's spirits were very low, she did not want to be in the hospital.  I knew her counts would be back on Thursday and we would be there until then.  I told the Dr's that on day 18 her counts will come back.  The Dr's said that sometimes with infections the counts take a little longer to came back.  I politely informed them that Kelly's counts would be back on Thursday, they would be around 300 and we would be going home then.  The Dr came in the room Thursday morning and busted out laughing.  Kelly's count did come back and they were 304. - Not bad for a mortgage banker.  I told him to never mess with a mother, let alone one who knows what they are talking about, we both laughed.  The great thing that came out of our stay is we got our MRI moved up till Thursday while we were still in the hospital so Kelly did not need to come back this week.  The results were awesome, the Dr's were looking for stable because it takes 3-4 cycles for the chemo to start working.  We just finished our 2nd.  Not only was the MRI stable, but it looked like some more shrinkage.  They did not have the final results, those will come this week, but we are headed in the right direction.  Small miracles are happening.  We go back September 4 for cycle number 3.  Three to go until all are completed.  Please pray that this cycle is not so hard on Kelly.  She still throws up daily from the chemo--that's how strong this stuff is.  Thanks for all the support and continue to pray for Kelly.   Love, The Malecki's     August 11, 2007   Hi Everyone,   First I would like to thank everyone for the highly successful benefit on Sunday.  It would not have been so successful without all the parties involved.  I think we were looking at the final number of 1500 in attendance.  For those of you who did not see it, Fox news ran a segment on the benefit on Monday.  If you go out to Kelly's web site there is a link to the segment that you can view.  My famous daughter, I just wish it was for other reasons.   Kelly's birthday was Monday August 6th.  She turned 5 years old.  Gary and I made made the best birthday possible, and she truly enjoyed her cousins coming over and playing her new WII game.  She had received so many presents I am running out of room of where to put them.   We went inpatient on Tuesday August 7th.  I wish I could say this time went as well as last month. It was the complete opposite from last month.  At one point Kelly was throwing up blood because of how raw her GI track was from all the throwing up she was doing.  Every 15-20 minutes it was coming from one side or the other.  I will spare the gory details; she was very sick this time, making this trip very difficult for her but also for Gary and I.  We were still able to come on Friday.  Kelly is doing better; she is just throwing up a couple of times a day.  I keep her on the anti-nausea meds constantly, setting my alarm to make sure she gets them throughout the night.  She has also started to throw up again first thing in the morning, making me a wreck.  For those of you who remember, that was Kelly's first symptom of all of this.  The Dr's do not think the throw up in the morning is tumor related, but as long as I live, whenever she throws up I will be a wreck.  She will be 40 years old and have a case of the stomach flu, and I'll be wanting an MRI.  Kelly's next MRI is not scheduled until the end of September, but after this last round her Dr and I compromised and will have an MRI next week.  The Dr's can't tell me why she is throwing up, but I said you can at least tell me why not.  The MRI will give me piece of mind.  Please pray this is all chemo related and the tumor is not growing back.  I thank everyone again for all your support and ask to please keep Kelly in your thoughts/prayers.  I will update again after we have the MRI next week sometime.  I have my pictures from the benefit that I will post to the web site shortly.   For those of you interested, there will be a biker benefit in October.  The date is Saturday, October 20 and is a Halloween themed party.  This benefit will be run by the South Suburban chapter of ABATE.  Every year ABATE selects one child, and all the money raised thoughout the year goes to that family.  Kelly was the child selected this year.  The parties are always a blast, and all money raised going to a great cause.  I will attach the link at the end of this e-mail.   http://www.ssabate.org/halloween_benefit.htm   Take care and it was great seeing everyone.  Please continue with the prayers.   Love, The Malecki Family   July 21          July 13, 2007 Hello All, Well, we just got home form Children's this morning after 4 days and 3 nights of our first round of Chemo.  Kelly did an excellent job of handling this round; we could not have asked for her to do better.  She only got sick once.  With the intense type of chemo she is getting, this is fantastic news.  The Dr's are very happy with how well she tolerated this round.  I hesitate to even type that because there could be a delayed reaction.  Not likely, but it could happen.  This first round will most likely set a precedence for the next 5 rounds.  The only difference being that after each round it will take her counts a little longer to recover, but as far as the sickness goes, the worst would have been 24 hours after the chemo.   We also did receive some additional good news!!  The small tumor they thought was left in Kelly's head is actually scar tissue.  When the Dr. called me last week, he called with preliminary results of the MRI.  After the Radiologist wrote the final report, the Radiologist then started calling it scar tissue.  Too small to rule out as tumor, but the Dr's are thinking it is scar tissue.  That would mean all the tumors in her brain are gone, and only 1 out of the 4-5 are left in her back.  This is great news, my miracle.  Sometimes I need to remember that miracles come in small stages; it's just hard when you are talking about your child and the seriousness of this disease.   We are far from over, but we are definitely headed in the right direction.  We have 6 more months of treatments, and then 5 years of possible recurrence, but one day at a time, and we are where we need to be if not better right now.  Kelly's counts will continue to drop over the next week, so we need to watch her for fevers/infections; she is very susceptible to them right now.  She will most likely need a blood transfusion over the next week.  We can do those outpatient.  The only thing that would make us go back inpatient would be infection/fever or if she started throwing up.   I would like to thank everyone for all their prayers and ask for them to continue.  I truly believe Kelly has done so well this far because of them.  Her next MRI is scheduled for the first week of September.  We need to pray for the tumor to continue to shrink and for her next round in August to go as well as this round did.   Love, The Malecki Family   July 2, 2007 Well, I can't say I'm not a little disappointed with the results today, but there is some positive news.   Some of Kelly's tumor's are gone, but there are some still left in her brain and spine.  The positive being some of the tumors are gone, and what is left in her body has shrunk and should be taken care of with the chemo over the next 6 months.   This is great news. However, I wanted my miracle: I wanted them all gone.  I will get my miracle; it will just take a little longer when Kelly is cured over the next 6 months.   Please continue with the prayers for Kelly; she starts her chemo again on Tuesday for 3 days of intense chemo for the next 6 months.   Love, Ellen   June 11, 2007 Well, we were supposed to be on our "vacation" from the hospital for the next 4 weeks, but it's been anything but.  On Sunday morning (June 3rd.) Kelly spiked a fever of 103.4.  I gave her some Tylenol and waited and took her temp again in 1/2 hour.  Her temp now had jumped to 104.  I called down to Children's and was told to bring her down to the ER. Gary and I packed up and left the house within 15 minutes.  By the time we arrived at Children's, Kelly's temp was 105.6 - yes 105.6.  I almost fell over when I saw that.  I can say that really scared me - but again kids are so different than adults.  An adult would be dead.  The Dr's took Kelly right away and started her on some fluids and a general antibiotic.  They drew some blood to try and determine what was going on in her little body.  Her labs looked good, and the fever came down with the antibiotic, so we were sent on our way with the explanation of it could be her body reacting to the chemo/radiation.  The Dr's also did a blood chemistry - this looks for infection in the blood, but can take up to 7 days to "grow" something.  Hey, I'm getting a crash course in medicine 101 and so are you!!  The chemo and radiation will remain in her body for 2 weeks after treatment.  That's why we need to wait so long for the MRI. (July 2nd.)  Kelly was fine on Monday, but spiked a fever again on Tuesday morning.  Again on Tuesday morning I was on my way down to Children's.  The ER Dr's drew blood again and more blood cultures.  I was told that this looked very much like a port infection.  Kelly has a port in her body so she does not have to be "poked" every time she needs medicine or chemo or blood.  They are great, but because they attach to the main artery in the body, they are a easy place for an infection.  We again on Tuesday were given an antibiotic, a specific one to treat a port infection and sent on our way.  Kelly was getting an antibiotic every 8 hours by IV that I could give her at home.  It runs for 2 hours and every 8 hours, that means 3 a.m. in the morning.  I stay up until the entire dose is gone to make sure there is no reaction.  This is a very strong antibiotic.  Home health comes out every day to take labs and blood cultures.  Everything was going good until Friday afternoon when we got the call from Children's that her blood cultures were growing bacteria, and we needed to come down to determine the specific bacteria because she was getting treated for something they thought was a port infection, but because of the positive cultures, it might be something else.  What they were worried about is that she could possibly have a blood infection, the infection spread outside the port. (Not good).  The hard part to that was I had made plans with my sister to take the kids to a carnival that evening.  I had to call my sister to come pick up Molly and when her boys ran into the house they were so excited that Kelly was feeling up to going to the carnival. They kept asking Kelly, "Are you going with us, and she jumped up and was like "yes I am" with the biggest smile on her face.  This is very hard on the boys; they are very close to my girls. Then Kelly saw me put the bags on the counter and her whole attitude changed, she said mom why are there bags on the counter?  She does not miss a beat.  She cried. She did not want to go to the hospital and wanted to go to the carnival, and then I cried. (not in front of her).  I have to say for the first time driving down to Children's I was mad.  I try not to get mad, wasted energy, I try my best to make the best of this, but I was pissed.  When we got to the ER, we were admitted right away and sent up to the floor.  The Dr. came in on Saturday morning and told us that worst case would be the port would need to be pulled and placed in another part of the body.  Not a big deal but that would mean another surgery for Kelly.  That was assuming that the infection did not spread into the blood.  Many test were run on Saturday, and it was determined that the infection was within the port and had not at that point spread into the blood.  The antibiotic was increased and is now given every 6 hours instead of 8.  Good news is we got to come home.  I can hook her up to the IV myself, and we are all more comfortable at home.  Watch out mortgage career, beware Medical field. lol.  Kelly is at home resting, and we pray for no more trips to Children's until we begin treatment again in July.  The cultures taken from Friday have so far come back negative (good thing) but can grow anything up to 7 days.  We need 2 more negative cultures before she will be taken off the antibiotic.  Sorry to blab - can't sleep.  Continue to pray for Kelly and the MRI on July 2nd.   Love, The Malecki Family June 1, 2007 Well, today marks the day that we finished with our first round of daily chemo/radiation treatments.  It has been a very long 6 weeks, and I am glad to say Kelly overall did an excellent job.  Next up is a much needed 4 week rest for Kelly.  We have a MRI scheduled for July 2 to determine the success of this first round of treatment.  Following the MRI we will begin the 6-8 months of intense chemo.  We have hit our first milestone, but we are far from over.  I would like to thank everyone for their prayers and ask for the continued support for Kelly.  Please pray for the results on July 2nd, and I will update then.     Thanks, The Malecki Family May 22, 2007 Hi All, Just sending a quick note to update everyone on Kelly's treatment.  Kelly has gained back 6 of the lbs she lost, but still has a few more go before she is back to her pre-diagnosis weight.  The good thing is she gaining the weight from the tube feedings, but the challenge to that was her mask that she uses daily for radiation needed to be re-made.  That put us back 3 more days.  When Kelly has her radiation, she needs to wear a special mask to help radiate only the areas that need it.  The mask is very tight, but the good thing is she is sedated every morning so she does not feel how tight it is.  As of today we have 9 treatments left, yes single digits.  Because we only have 9 treatments left, the last 8 will be very difficult for her.  The Dr's will be giving her the highest radiation her little body can handle.  They figure now is the time to zap them all to get rid of them.  She is currently getting chemo and radiation daily but is getting the most radiation she can ever get.  She will never be able to get radiation again.  That would leave us with an end date of June 5 for this part of the treatment and a tentative MRI date of July 2.  Please pray for this MRI; this is a very important one.  This will tell us the progress of her treatment.  I do not use the word hope in her treatment/progress so let's say the MRI will say tumors have shrunk.  After the MRI she will go for additional chemo for the next 6-8 months.  This is be massive doses of chemo, so we will need to be admitted into the hospital for this.  Our stay will be anywhere from 3 to 4 days every 28 days.  Her spirits are up and down daily.  The Dr's are actually happy with that because if she was up every day they would be worried that the treatment is not working, and if she was down everyday, that could also indicate the treatment is not working.  So because she has good and bad days, that's a good sign.  I will say again how difficult as a mother this is to watch her go through.  I have never experienced this kind of emotional pain, even when my dad passed away.  And what makes it worse is to think how hard this is on me, imagine how hard this is on her.  Gary and I remain very positive that this is a side road in our lives and Kelly will beat this.  I was driving down to Childrens the other day and thinking about that saying that God only gives you what you can handle.  I thought to myself, God I'm flattered that you think I'm this strong, but enough.  Later that day I also thought if this is about a fight, not with God but with human strength and spirit, then bring it on.  Those of you who know me, know I will not back down or lose that fight.  Kelly will find her strength in Gary and I and overcome this - I believe that.  Molly is doing well always bringing the extra life we need into our house.  She is the smallest one in the house with the biggest personality. How does that go, your kids are twice as wild as you were.  Well I'm getting mine and then some with her.  Please continue to pray for Kelly and pray for that MRI scheduled for July 2.  The prayer is very important to her healing.   I want to personally thank all my WAMU co-workers for everything they have done for my family. The company had a bake sale and raised a ton of money for my family.  That money will help us focus on Kelly's treatment rather than worrying about other things, so thank you to everyone who contributed.  I have attached some pictures from the bake sale, one of Kelly on her swing and one of Molly - well being Molly.      Failure is not an option; hope is not a strategy     Please continue to pray,  Thanks,  The Malecki Family

 The bake sale fund raiser by Washington Mutual employees!