October 27th 2009
Today God gave Alexa Rae her wings....Fly baby fly... on this Tueesday October 27th, 2009 at 12:pm Alexa Rae courageously compleated her prescribed course of chemotherapy. For her strength, courage,& faith She is My HERO! To my baby girl... I LOVE YOU! and never stop the CLIMB! October 20th 2009 Alexa had another round of chemo today it went smoothy. Last week she had some lasts... last vincristine, last predisone and we r working on our last week of nightly chemo 6mp. On our next visit which will be on tuesday oct 27th alexa will have her last round of methotrexate. and she will be finished with treatment. God truly blessed alexa rae. October 6th 2009 Today Alexa had another round of chemo and she is still going strong... In August 2007,Alexa was diagnosed with cancer.Since then she has been undergoing intense chemotherapy treatment.This has been life altering for her.But God blessed her with life.She has also been blessed with wonderful,caring, thoughtful friends & family like you who have stood by her side throughout her struggle.While going through treatment Alexa said to me: “I am in a cocoon; when I’m finished with treatment,I will blossom into a beautiful butterfly.”
Please come and share this moment with her at 7:00 p.m.On October 27th. ~Cake & Coffee~ SURPRISE...SHHHHHHHHHH September 29th 2009 Another month has come to an end. Alexa had a tough weekend not feeling well and more added to it today which has really wiped her out. Looking foward to the end of the week for her to feel better. And seeing the end of the tunnel now. light speed please! September 15th 2009 Today Alexa was back at the hospital for another round of chemo and a flu shot. The oncology floor has a flu epi and we all spent the day in masks.oh happy day! Shes feeling ok just resting now. Pax&Love to all... September 9th 2010 Alexa is still going strong during her weekly chemo treatments. She was very excited to start school again and is loving it. This week she is feeling good and i believe it thanks to her friends. They are a strong group that is good support for he. Thank you to all of you. Please keep the prayers comming the light at the end is starting to show. Pax and Love to all... August 25,2009 Today we were back for another treatment. She has been doing well and having her friends around makes it so much easier for her. Thanks to all of you. Today went well shes just tired. Next week will be a bit rougher for her all around but she will get through. All shes looking foward to is the start of school.Sept. 8th.Love to all until next week. August 11,2009 Today we were back in clinic for another round of chemo but it was a different day for her.All went well quick and easy the difference was that Three of her friends asked to go with her this time. She was happy to bring them along. All went smoothly and i think they were happy to be a part of this part of her life, after they got over being a little woozy. love to all. August 2009 Alexa is still going strong with her treatments.Shes tired and has had enough. Her summer has been ok she has had both up and down days. She is hitting her 2 year point within days so we are finally seeing the light at the end of the tunnel.All i ask is that God and her friends keep her strong to get her there. Please keep the prayers and well wishes comming.Thanks and love to all. July 14th 2009 Another day back at sch. This feels llike its neverending. But we had a good past week and anothe good day today. She is feeling well and happy to be getting some rest.Not looking foward to next week its gunna be a rough one. June 30th,2009 We had a bad couple of weeks but its been getting better. Today was a normal day in clinic, she had all her chemo and started her heavy week meds todays.Looking foward to a more relaxing summer. love to all. June 9th 2009 Today was another day in clinic. Full chemo and pantamadine. Shes doing well. tired and a little bit sick.Tough weekd ahead we shall pray for a smooth ride. Love to all. June 2nd 2009 Today was another day back in the hospital we have been going weekly but she has not been feeling so well lately.Today is a good day. Other then the same sinus infection for months she is strong so far this week. May 12,2009 No excuses i just havent done it. im so sorry. Things have been the same crazyness as all along i have just been a little more tired myself.Alexa didnt have the best past couple of weeks but is feeling much better as of today.Even after having chemo this morning.This is good.She is still going strong and we are looking foward to a closer end. Thanks for the thoughts and prayers. Love to all. April 21,2009 Sorry its been a couple of weeks but its been a little crazy with everything lately.Today is Alexas 15th Birthday.Happy Birthday Baby Girl...Today is a good day for her she is feeling well and happy to celebrate.Past couple of weeks have been a little rough but she is doing well and is on schedual with all her chemo. Thankful for this day to share with her and looking foward to next year even more.End of her chemo god willing and the start of her sweet sixteen and life cancer free once again.To all our friends and family thanks for being there for us always. March 24th 2009 What a week. Alexa was home all week not feeling well at all.The chemo was raised and kicked her ass once again.She ended the week with a comeback of the sinus infection,and today had another round of chemo...OMG shes not at 100% but is feeling a little better.Thanks for remembering us and please keep the prayers and well wishes comming,We will continue to pray for all in need as well.Love to all. March 17th 2009 Today Alexa was back at the hospital for a long day of Chemo. She went under anastheia and had Two kinds of spinal chemo then her regular chemoand her hour antibiotic drip. Its been a long tough day and shes not feeling so well at this moment.Pray that this week passes quickley and pray that she stays as strong as she has been. Love to all. March 3,2009 Alexa was back at the hospital having her chemo and iv antibiotic. All went well and she is home sleeping like a baby. February 10th &17th Sorry i keep loosing weeks...still fighting sinus last week. she is doing better this week. She had her chemo and pantamadine today all went well just feeling a little sick...i promise i will update weekly starting now.Love to all... Feb.3rd 2009 Alexa had a really good past week besides for dealing with the sinus drips and mid terms.Today she was back at the hospital for a full round of chemo and her iv antibiotic.All went as planned and she is home in bed feeling like shit. She is still the strongest girl i know and i am thankful to god that i have her... Jan.26th 2009 We are having an ok week all went well with chemo this week and her levels are still good. We still have the sinus infection. January 19th 2009 Today was another day at the Hospital Alexa had 2 different appointments one with the Ortho and the other for her Chemo and iv antibiotic. The Ortho confermed that she did have a small fracture and she is healing fast. Thats positive for once just extra care and some PT. Chemo went as planned and She will be going to an ENT being she cant get rid of the sinus infection. All in a day... January 5th and 12th,2009 Sorry once again about not writing last week things have been crazy...She is doing ok still a little of the sinus left and she is up to date with her chemo. Yesterday Alexa tripped over someone in the hallway at school and is now in a full arm cast...More fun.She was back in the hospital today having her full chemo treatment and more of that fun pred.Im in for another long week.Much love to everyone PLease pray for all of us... December 23 and 30th,2008 Sorry I didnt update last week but its been a little crazy. Alexa was not feeling well. She has been trying to fight a really bad sinus infection. She starting running a slight fever and we didnt think we would be able to be home for the holidays. Lots of prayer and the fever broke before it was high enough to go to the hospital.She has continued with chemo as schedualed, but continues to fight the sinus thing. Four weeks on clyndo and we are still trying to get rid of it. We wish everyone HEALTHY and Happy New Year. And please keep the prayers comming.Love to all... December 16,2008 Alexa had her chemo as planned all went well. She is fighting a sinus infection and not winning.For some reason the antiobiotic is not knocking it out after a week on it and the mucus just keeps building up. We are praying that it stays in her head and dosent reach the lungs.And also we are praying for no fever...She will be home until she gets better so shes not so happy about missing school...Happy Holidays to all.Please pray for her. December 9,2008 Another week has gone by.Alexa is now fighting a sinus infection but she is doing well. Sorry for being late with the update its been a little crazy.I wish everyone a happy and healthy holiday season...love to all... December 3,2008 Another day of treatment. All went as planned it will be another tough week but she will get through it. She looking foward to happy holidays. All have a good week. November 25,2008 Today was another day at clinic Alexa did very well with treatment and we are loking foward to a relaxing week. We will Be very THANKFUL... Happy Thanksgiving to all. And i want you all to know that I am very thankful for all of you love support and prayers, and most of all another thanksgiving with Alexa Rae. November 19,2008 Sorry a day late but its been a long week. Alexa had a delayed reaction to the spinal chemo and ended up with swelling in the brain to make it simple it was a tough week long day at the hospital tuesday. hours of hydration and special meds did bring down the swelling. lets hope we can have a better ending to a bad week. November 11,2008 Today was a long day at the hospital. Alexa had all of her chemos and also her spinal chemo. Long and hard day so shes not feeling so well tonight. Long week ahead so lets pray she has a better day tomorrow. November 4,2008 Today was another day back at the hospital.It was suppose to be an easy day but nothing is ever easy. Alexas been having alot of pain in her legs so we ended up going for X_Rays. We should have an answer this week on if the prednisone is breaking down the bone s in her knees and then we will take it from there.I will let you know when i find out. Next week will be a tougher oneso keep praying for her... October 28,2008 After a long,emotional and painful week we made it through the week .Today was a new day at clinic.She did well with her weekly chemo and we are just looking foward to a better week ahead. October 21,2008 Another day in clinic for treatment. All of Alexas chemos have been raised to highest dossage. So far today she is doing very well no dramatic reaction. Rough week ahead but she will be fine. Please look at new pictures Light the night walk 2008.We had a nice turnout thank you all for your support in getting one step closer to finding a cure.We will continue to fight.Hope we all have a wonderful week... October 14,2008 Today was another day back at the hospital for weekley Chemo and now iv antibiotics every 2 weeks. She is now at a higher dosage of chemo which will help the bone marrow stay in remission. This is a good thing they tell me. She did fine, and spent the rest of the day resting. This weekend is light the night anyone wishing to walk or give a donation please contact us.Hope to see lots of our loved ones around. Have a safe week... October 7,2008 Alexa was back at the hospital for her weekly chemo and a flu shot. We had to up her level of chemo today hoping that her levels stay up. We havent found the answeres to why she is in the severe pain but we are still working on that and atleast we have new meds to lower the amount of it.I will keep everyone updated. September 29,2008 Alexa had her chemo a day early today. All went as scheduled its a harder week so the extra few days will be good for her to rest.We will be back next TUES. Please visit the events tab on the wesite. Light the night walk Oct 18th Please help and join us to walk.Thanks September 23,2008 Today was another day at the hospital our second life.All went well and all of her levels were good. She recieved her chemo and we will be back next Tues. September 16,2008 Alexa was back at the hospital today for more of her weekly chemo.All went as planed,and Alexa slept the day away.I will update next week. Dont forget Light the Night Oct.18th. Alexa is still trying to reach her goal of raising 1000 dollars.Please try and help. Thanks and keep praying... September 9,2008 Alexa had her weekly chemo treatment today and just resting for the day.Alexa was able to start high school with everyone else this past week and to see the happiness on her face could make anyone smile.Looking foward to smooth sailing ahead... September 2, 2008 Alexa was back at the hospital for her weekly treatment today she did very well and more then ever her spirits are really high. Tomorrow she will be able to go to school and start her first day of high school. Im so happy for her... August 26, 2008 Alexa was back at the hospital today for her weekly treatment.She had a rough couple of days and today didnt help. She spent the day sleeping regaining her strength we hope tomorrow she will be back to feeling good again. August 23,2008 Happy 1 Year Alexa Rae!!! Today is 1 year since Alexa was diagnosed and treatment began. It has truly been a very long year for her and no words can come close to explaining what she has gone through and the experience she has had. Today is very special and we will honor this day for her. We look foward to the treatment comming to an end and the nightmare being behind us..We love you all and thank you for your support, But we also ask that if possible please keep it comming. Treatment will continue weekly until November 2009..please PRAY FOR ALEXA RAE... August 19,2008 Alexa was back at the hospital for more treatment today. It was a long day and shes not feeling so good and very tired. Tomorrow will be better. August 12 2008 Sorry about the last weeks update i did write it but it didnt stay. Maybe i forgot to save it...She has been doing well just tired and busy. Alexas levels are holding there own which is very good.She will be back at the hospital on tuesday for another round and on Saturday the 23 it will be 1 year since this nightmare started. I will try and do a litttle something special for her it is well deserved. I promise i will update on tuesday.one year and six months to go saturday...keep the prayers comming. August 5,2008 Sorry i was late with the update,its a crazy week.Alexa was in clinic today and had her weekly treatment.Shes feeling better but is having trouble sleeping at night and some headachs.Her levels are good for the week. Love to all... July 29,2008 Lets start this weeks log with yesterdays events...They were good...Alexa was invited by The Leukemia&Lymphoma Society to go to Times Square and Help ring the openingbell for NASDAQ so she did. What an experiance and yes she was on tv and the big sign in times square.(pictures to follow)Then of course it got better Her cousin John invited her to come visit him at work in wall street so she went and hung out on the Merril Lynch stock floor. She had a truly amazing day.Now for today...we were back at the hospital for weekly treatment and all chemo went well...but...Alexa will have extra rest and no camp for a little because she has bronchitis. Some extra meds and prayer for the week and hoping for a quick recovery. Until next week... July 22,2008 Today Alexa had another round of treatment.It was very quick and all went fine. Shes doing well except for being a little tired.Her levels are 4000 and all blood and platlets are holding their own. Pray for continued smooth sailing. Love to all... July 15, 2008 Today Alexa was back at the hospital having her weekly treatment.She had a couple of bad days and was in a lot of pain that we couldnt control. Today was a better day for her. Levels are high pain is gone and her chemo went well. We are glad that the last three days are behnd us.until next week, Love to all... July 8 2008 Alexa was in clinic today for treatment. She had her spinal chemo today and it hasent been a good day for her.We are hoping for a good night so she can be better tomorrow.Please keep the prayers comming,and that you all for your continued support. Love to all. July 1 2008 Today was another day at the hospital. Alexas levels are staying at a good place and she had no problem with her chemo today.Resting well she just a little tired.Next week will be a harder week for her so keep the prayers comming. June 26,2008 Today was truly a beautiful day 'I feel i need to share it with all of you. Today Alexa graduated WMS with her class. She will now be a high school student in september.It was truly the most wonderful thing i have seen in a long time.She is truly an inspiration to me. June 24, 2008 Alexa was in today for her weekly checkup and Chemo. Her levels are still on the rise as she continues to amaze everyone with how good she is doing. Besides running out of energy she is still doing great. June 17,2008 Alexa was back in the hospital today for her weekly Chemo and IV antibiotic. Her levels are higher then last week and her Dr. cant believe how good she looks and how amazing she is doing. I do agree. In the past couple of weeks she has just come alive. I believe that it is a combo of things Prayer,her newhouse, and being able to see, and start spending time with her friends.I dont care what has caused it im just very thankful to have her back. Please keep praying and i will update next Tues,unless anything comes up.Love to all... June 10, 2008 We had a funfilled and safe trip and we arrived home to return back to the reality of the hospital. All of Alexas levels were very good and she had her weekely chemo. I will update pictures from the trip and alexa will give a summery as soon as i figure out how to download the pictures...until next week.... June 3, 2008 Alexa was back at the hospital for her weekly chemo. Her levels were all amazing and she had all treatments. Tomorrow we are leaving for Nashville for Alexas Make a Wish. She is very excited and looking foward to this. We will update you all when we come back next week... Love to all...and please keep the prayers comming. May 27, 2008 Today Alexa was back at the hospital to start her next phase of chemo. All went as planned and she started. Alexa will now be getting chemo every week for the next year and a half. If all works out this chemo shouldnt have the same level dropping effect ,and she will not spend all her time in isolation. So lets keep praying for the best. If all goes as planned next Wed. Alexas make a wish will come true and we will be in Nashville Tenn. For the country music festival!I will let you all know Tues.Keep on praying and love to all... May 20, 2008
Alexa's levels are very low this week and shes back in isolation. She had no chemo this week and will start again next Tuesday.Except for being tired she is having an ok week. Will keep you updated next week. May 13, 2008
Today Alexa was back in the hospital for a check up and her iv antibiotic. All went well, but shes really moody and emotional from this weeks round of pred. Shes back in the hospital on friday for an ecco and level cheek. Pray for a better mood swing. Until next tues. May 6,2008
Alexa had a really good week her spirits are really high and she laughed all week. We were back at the hospital today and to both our surprise her levels were at perfect levels all around to recieve he last round of big chemo. It was a big day for her. Next time she is due for treatment it will be in the maintance phase. Which means that we are that much closer to it being over.Her next phase will take a year and a half, but the chemo is not as strong as shes been getting, and she will be able to get back to her life. (less restrictions). I will update on tuesday... April 29
Today Alexa was back at the hospital for a checkup. Her ANC is now 279 and it looks like she will be in isolation for a while. She has to go back on friday for some blood, and at this point it looks like she will not be getting her scheduled last high dose round on tuesday. We are still praying that her levels jump for tuesday, if not the following week. Keep the prayers comming... April 22,2008
Thank you all for your birthday wishes they brought smiles to her face.Today we were back in the hospital to check levels no treatment needed. All levels were good, only a little low on the platlets.Nothing is scheduled until May 6th when she is supposed to get her last round of outpatient high dose and then we will begin her maintance phase. We are looking foward to that. Lets all pray that she will have that treatment on the 6th. I will keep you updated next Tuesday. Happy Spring...Love to all... April 15,2008
Today we were back in the hospital and Alexa was able to have her next round of chemo.Back on schedule and we are thankful.Lets hope that this round goes smoothly and let her levels stay high and keep her feeling good so we can celebrate her birthday this weekend. Keep the prayers comming we will be back at the hospital on tues... if anyone wants to here the song that was made for Alexa by Songs of love please visit www.songsoflove.org Highlight News, and the click on Headlines, then go to second picture top row(says video on top of it), You can play from there. Next update on Tues. April 10,2008
NO CHEMO TODAY...We will try again Tuesday... April 8th
Today we were back at the hospital to get a round of chemo. It did not happen once again. Her levels are still not at there desired level. Which means that we have to hold off once again. We are going back on thursday to see if they did go up. If they do we will stay and have the treatment, if they dont we will try again next tuesday. Its a very difficult place we are at. Two treatments before we get to an easier place in her protocol and we just cant seem to get there. I will keep everyone updated on thursday... April 1
The joke was on us today! We were back in the hospital for one of two of her last rounds of high chemo. It didnt happen. Her platlets we at 52 and they needed to be at 75 to have her chemo. Her body has to make them on there own for chemo, so we will try again next tues. PRAY THEY GO UP AND NOT DOWN.Since we were already there we stayed around for Alexa to have a quick fix of some red blood it was getting low. Shes feeling good tonight and will just take an extra week to ready herself... until next week. March 25 I hope everyone had a happy holiday weekend! Today we were back in clinic for a appointment. Alexas levels were still holding their own and she did not need any transfusions. She also had no scheduled chemo for today which was really a nice treat. So today was a good day. Other then her ANC dropping shes doing well. Next week we are scheduled for another round of high chemo. So until next week we shall pray for more good days... March 18,2008 Today we were back in clinic. All of Alexas levels were really good, and she had an amazing week. Today was Alexas last day of leg shots. Im truly relieved and grateful. As strong as she was for all 26 weeks of them, it killed me just a little more each time to watch her be so brave. So today was a happy day for all. We go back on friday just to check her levels and if all are good we get to enjoy the holiday with family and friends and not in isolation.Keep the prayers and good thoughts comming there working. March 12,2008
Was back in clinic today and Alexa had a full day of chemo.She did well.We will be back in on Tuesday. Lets hope we have a good week... March 11, 2008 Today we were back at the hospital. Alexa had a bone marrow asp. and iv antibiotic. Her levels were really good and she didnt need any transfusions. We are back at the hospital tomorrow morning for a full day of chemo. I will update tomorrow. hoping tomorrow is as smooth as today. Please pray... March 6th
Sorry i missed a day. We are home. We came home last night. Computer was being funny and i didnt have the strength to fumble with it. Alexa is doing well and very happy to be home. Good news she gets to rest until Tuesday when we are back in the hospital for more chemo. i will keep you updated.But for now im just tired. March 4 (Day 8)
Another day, another adventure here at the hospital. Today Alexa started some pulmonary treatments to help with her breathing and lung capaticity. Those treatments and her normal medications was the easy point of the day. The fun started with her CT scan today. She had to have contrast for the scan which she had done before without any real problems, but today they had to do IV contrast as well. Unlike everything else this can't go through her port. The unfortunate part of this is that Alexa has very bad vains and an IV stick of course is a problem. Alexa was Stuck poked and prodded and made it through the ordeal . Eventually later on they finally called her down because she missed her orginal appointment because they had problems with the IV. Alexa is feed up with all the test she is being stronger then ever in what she had to go through in the past week. We just need to get home and get some rest. March 3 (Day 7) Lets start with last night first, Alexa was having some diffculty breathing while she was trying to sleep .Turns out that Alexa's oxygen level was low and she was is respitory distress, and had to go on O2 last night. Her fever broke during the night and didnt come back today. Thats our good news of the day.Today we got some answers, Alexa has pneumonia . May not be somethng that you would want to hear ,but it atleast gave us an answer on why she had this fever. Once again they changed her meds but now they think they know what they are treating.Once this medicine kicks in she can kick this things butt so we can get back home to our comfy beds...waiting for a cat scan to try and find out what type of pmeumonia this is. Pray for a quiet night 1 good hour would be nice... March 2 (Day 6) Last night after the update we had more drama. Alexas port access line became clogged and she had to be deaccessed and accessed on the spot without any numbing cream. She pulled through like the strong little woman that she is. Thats not where the night ended. About 11pm Alexa had to start a new med, and of course she had a reaction to it. Lisa (the nurse)set her meds in the line started it and left. Within 5 sec. Alexas entire body turned bright red and started burning up. She started gasping for air, and her chest starting flailing. withen secs i ran and collected the nurses who werent comming fast enough for me. They stopped the med and flushed the line.I wont even go there and explain the fear both myself and Alexa had. I spent the rest of the night watching the rest of her meds run throughher body until 5am. Ok today ...less fever but still there. Her nose is starting to run and the mucus is increasing. Maybe we finally are going to find a cause for the fever. Another change of meds again and this one just made her tired,and another chest x ray. We will have results tomorrow. Did anyone realize today is sunday . (hello)ok blood pressure is creaping up on her again ,and running high... Ok one more thing to share with all...As you all realize Alexa is not the only one going through this and she has become close to many of the children at her oncology home. Yesterday ,we lost a dear and sweet friend Katie. Katie was 11 years old and fighting with all she had against her type of cancer. I just want you all to say an extra prayer for Katie who is now in Heaven(our new Katie angel). We will miss her very much and always love her...Prayers are heard and ment to be answered keep them comming please... March 1 (Day 5)
It has been 5 days and she still has a fever. Alexa had another nose bleed today and also needed blood today. Her main Dr. has in patient starting today and didn't like what was going on. He took new blood to run the test on because he doesn't believe that everything is negative. He also changed the antibiotics that she is on. The pass five days have taken a toll on Alexa and myself, we are more than ready to come home to our own comfy beds. Here to Alexa's Dr. working his magic and getting us back home.... Feburary 29 (Day 4)
Alexa is still in the hospital, the fever still won't go away and there are still no answers. Alexa has been getting her rest and eating well and besides the fever has been feeling pretty good during the stay. Todays fun had to deal with a nose bleed. It took a while for it to stop and a couple of clots came out, so the doctors decided to give her platelets. Now that is under control it is back to working on the fever again. Feburary 28 (Day 3)
Alexa's fever still hasn't broke. This evening tyenol isn't helping knock the fever down any and we had to go to cold compresses to help try to lower her temp.Her platlets and rbc are dropping so we are hoping the fever goes before she needs a transfusion because they wont transfuse with fever. She also had low bp this afternoon, which they have gotten back into the normal range by giving a bolase. She went for a ct scan which we are waiting for the results, which will probaly be in the morning. We even had some puking today which is making the day even more fun. Still waiting for the answer for why she have this fever, pray for better news tomorow... Feburary 27 Still hanging out in the hospital and she still has her fever. We still don't have a cause for the fever. Chest xray that we had to get today came back negative. They are thinking about a ct scan to see if there is a sinus infection, but we don't have an answer if we are actually going to do it. Tonight we had another test, they took her boogers and put them into tubes. They are checking to see if she has the flu. As long as she has a fever and no answer why she has it we are still hanging out with the nurses at Schneider's Med 4.until tomorrow... February 26, 2008 Alexa had her normal appointment at the clinic today, which we thaught we will be doing her next round of chemo or atleast just get her levels checked and maybe some blood. After a long wait which isn't normal to see her Dr. we found out the her levels were still low and that this weeks chemo was put on hold. We also found out that she needed to get blood as well as platlets. As we were getting ready to finish up the last bag of blood after a long day, Alexa spiked a fever which now made a long day a whole lot longer. Because of the fever we would not be going home and be spending a couple of days in the hospital on antibiotics just in case she might be catching something. So after a good run we are back in for a couple of days...more to come... Feb.19,2008 Today after a long week Alexa was back at the hospital. She started her day with a fingerstick and then went off to her last radiation appt. Yes that part is now behind us. She earned a purple heart from the raditation dept. We finished and went upstairs, met with Janie and went over her still low levels. Yes we are moving up but still in isolation. Alexa also needed platlets and her leg shots. All in all except for low levels she is doing ok. Next appt. is on Friday. Until them..Pray Feb.12,2008 Today we were back at the hospital.Alexa had more radiation and then continued in clinic with platlets, iv antibiotic infusion, and leg shots. Her levels took a dramatic drop from 1850 -100 so we are back in isolation and starting gsf shots tomorrow to try and bring up her levels. Good news... only 4 more rounds of the radiation and 3 more rounds of leg shots. OH happier days!! we will be in the hospital daily until friday for radiation and to keep an eye on her levels. I will keep you updated on any changes. Until then keep praying. Feb.9th 2008
Sorry i didnt update at the end of the week but it was a long one. Alexa finished her first week of radiation and only 6 more treatments to go which totals 10. Next one is monday. She did amazing, strong as always. So far shes just really tired and cranky being that its also a prednisone week. Im sorry and i will keep you updated again on tues. February 5,2008 Today was truly one of the longest days.We started off going in to have a fingerstick at 7AM. Went downstairs to Radiation And was walking through the door and was called back upstairs due to low blood levels. Below a 8 in clinic is means for a transfusion. In radiation is it anything below a 10 to transfuse. Alexa was 8.9 today. We went back upstairs she was accesses and type and cross then granted permission to get radiation before transfusion. And went back down and Alexa had her first round of radiation today. We finished and went back upstairs saw Janie, and was ok to go down for anesthesa. She had her spinal chemo woke up and went back upstairs .Once she was back in clinic she continued with her vincristin,Zinacar, and Doxy.(Chemos) Followes by 1 hour hydration and asparaganase shots.Followed by another hour of hydration.And if that dosent seem like enough she then proceeded to have a 3 hour blood transfusion. All i have to say is Alexa Rae is one strong brave little girl. She is really a trooper.Im sure i dont have to say how exhusting this day was,But i will say im going to bed. We got home around 530. It turned out to be an 11hour day. We are back at the hospital tomorrow for radiation and will continue until the weekend. In case i forgot to mention we are back in clinic on friday her platlets are low and will need a transfusion. Fridays schedual will be platlets,radiation and an ecco.I will keep you updated. Jan.29,2008
Today Alexa was back in clinic for her regular weekly treatment of chemo.It turns out her levels did go up just not to the desired level of shopping.She had a surprise transfushion of platlets and then rushed down for her raditation simulation. Truth be told we were both scared of the unknown but only one of us got to cry.Alexa now has two tattos. Only pin size and nobody but her mother will ever notice but they are there and i see them.She did fine, Shes just very tired its been an emotional and exhusting couple of weeks and day for us. We will be back in the hospital monday and i will keep everyone updated daily until the 19th when her raditation is complete.Please keep praying we need your strength. Love to all. Jan.22,2008 Today was a long day at the hospital. We went in just for our weekly muscular shots an ended up spending the whole day. Lets start with her levels thats simple she has none.She reached her all time low of 26. Total isolation. Then she wanted a bag of platlets that was also to low. Of course we are talking about Alexa so that wasnt enough she then went for 2 bags of red blood. Still more ...gcfs shot to build up her levels. and finally 2 knee xrays and 2 hip xrays. They are now believing that one one the chemos that she has been getting has become more toxic then helpful to her body.And causing to much leg pain they think it is possibly breaking down the joint bones in her legs. We shall have those results by friday.More up dates later in the week,right now im tired. Jan. 16 This morning Alexa got her antibotic iv. At that point in the morning everything was going good. We went down to meet the Radiologist for her radation treatment and then the day got interesting. Waiting to be seen in Radiology, we got a call from her doctor saying that her Potassium level was real low and that we had to get it tested again. Now we left radiology and asked them to call us when ready to see her, and went back to the clinic. At this point we were told that if we couldnt bring up her level then she was going to be admitted. They had to reacess her to have the test done and she had to be put on an iv with potassium and also take an additional pill. At this point the radiologist called and was ready to see Alexa. We had our questions and answers session and scheduled Alexa's radation appointments. We are starting on Feb 5th and it will take a total of 10 days if all goes well.After finishing in radation we went back to the clinic to find out that her levels were better and we able to come home. Friday we have to go back just for a blood test to make sure the levels stay were they need be and for them to deaccess her port. Now we are all home and resting from another busy treatment day.. Jan.15,2008
Alexa spent the day in clinic having another round of chemo. She did very well. We have to go back in the morning because she is also due for her antibiotic which she gets once a month. It is infushed over a 2 hour period. Because she had so much already today it was just better for her to do the rest tomorrow.We also have an appointment tomorrow with a new Dr. to go over her next treatment which will be radation.So I will update again tomorrow. Jan.8,2008 Today we went back to clinic to have weekly chemo. Alexas levels were all up and improving shes not able to go to the mall yet but she can have just a little more freedom.She is also still fighting off a upper respitatory infection but due to the no immune system thing that fight is going to take a while.On the good note...She starts back this week with her tutors and very much looking foward to that. Next week is a big chemo week which means we will spend the day in clinic. But lets get through this week first. happy day to all. Jan.4,2008 Today we spent most of the day in the hospital. Alexa needed blood.Her ANC levels are really low in the hundreds along with her blood.She is fighting a sinus infection and a nasty cough. Good news with all of this is that we are still at home, Isolation yes but home. Alexa decided yesterday after feeling a little better (having had one part of her transfushion) that she now believes that vanpires are nutrapenic. She believes it makes total sense. They are pale and weak and need blood.Once they get the blood they get their strength back. Think about it she has a point... Next update tuesday as long as all goes well we wont be back in clinic until then. Jan.2, 2008
Happy New Year to all. Alexa was back in the clinic today for her weekly chemo. Her levels were very low and is now back in isolation.On top of that her blood count was also to low and is schulded to go back to clinic on friday am for a blood transfusion. Extra energy for the weekend.Other then that we are enjoying being home for the holidays and spending the time with family and friends. Healthy and Happy to all... Dec.26,2007 Today was Alexa's first out-patient round of Chemo.We got to the hospital around 7:30 and finished around 2:30.Everything went smoothly and we were able to walk out the door. Other then Alexa having a cold she has been doing well. This evening she had her regular throwing up from the chemo but when i reminded her that the good part about this time, was that she was home in her own bed(or mine) feeling like shit and her puppy stayed right by he side...Our Next appointment is Wednesday so we want to wish everyone a Happy and HEALTHY New Year be safe and our love to all. |
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Dec 21, 2007
Yes we are still home and Alexa is doing very well.She had her outpatient chemo for the week and she handled it like a trooper. We are back to the hospital on Wed. for a big round of Chemo which she will be doing every three weeks as an outpatient it takes about 6 hours a day. For now we are home and she is just looking foward to Christmas.So Merry Christmas to all of you and we pray for all to have a Healthy and Happy 2008.With lots of love to all. Next update will be on Wed, 26 until then... Dec. 9 (HOME) We made it home today.This round which was suppose to be the hardest turned out to be very smooth. Alexa cleared her levels and we were done. Today marks the milestone her last high dose treatment is finished. Thank you lord.We are now scheduled for weekly Chemo treatment at the hospital as an out patient for the next year and a half And also a round of radation in three months. Now unless she gets fever or sick no more planned hospital stays. Hello to our own beds! I will keep everyone updated on Tuesdays just to let you know how treatment and she is doing. Please keep praying and writing we need all of you. Thanks for caring. love to all. Dec.8 (Day 5) OK Alexas day went fine we are waiting for her levels to clear this morning we were at 0.11 we need to be below .01. So being so close we retook levels at 6pm. Guess what they came back at .01.But of course we have to wait until they are just below.Just meaning another night in the hospital and continued high level of hydration for Alexa. We are hoping to go home tomorrow. We will call Grandpa at 6am to pick us up.Keep praying for us, until tomorrow. Dec. 7 (Day #4) Alexa's MTX levels have come down nicely today, but she had some other levels leave the good zone. Water retention is building up and some lasix had to be given.But throughout this she is being the strongest ive seen her.My HERO. She was feeling good enough today to go down to the holiday sale, as well as spend sometime in the playroom. She also ate well for breakfast and lunch, but didn't feel like dinner. Except for a little nausea she is doing good and looking foward to going home. Until tomorrow.... Dec.6 (Day #3)
He hears our prayers...Today was truly a wonderful day...Alexa had her first easy day in a long time.She finished her high dose and just took it easy for the day.She is tired and already looking to go home. She has puppy on the brain...Now we just wait for the levels to drop and go home lets keep praying that it just stays this easy...until tomorrow... Dec. 5 (Day 2)
Alexa did well throughout the night but started her morning with a new twist (how shocking) She took her pre-nausia medication to start her high dose and had a reaction to it (for the first time). She started flipping around in the bed like a fish out of water. Can you say 10 more years added on to my life. The good news is it passed, but she is never gunna be able to have that med again. Her high dose was started at 10:45 am which followed her normal nausia and vomitting.The rest of the day and evening was spent sleeping threw the hard times(it works for her) until tomorrow...keep the prayers comming. Dec. 4 Day 1 (last high dose admission) We are back in the hospital today to start the last round of high dose chemo. (OH HAPPY DAY). After a extra week of rest and relaxation away from the hospital all her counts stayed good and we are able to start her last round. We got to our room and settled in by 3,and by 7 this evening they started her chemo treatments. Now we are getting ready to get some rest after a long day. If all goes well tomorrow morning they can start her high dose chemo (a 24 hour drip) Here is to all going well and no crazy happenings this time around.Let the praying begin... Nov.27 Scheduled Admit Today we were suppose to be admitted as our last scheduled admit. Guess what it didnt happen. Alexas ANC levels were 832 which were ok...she needed 750.Her new problem was that her platlets were to low. She needed to be at a level 0f 75, and she was only 45.So as of now we are home until friday when we go back in just to check levels. If all is good we will be going back on Tuesday to try again for our last high dose.Until then we are going to rest and avoid any bad germs.Keep praying. Love to all. Nov.22 Happy Thanksgiving After watching the parade on tv while having a blood transfusion. We ran out the doors as fast as we could.I didnt even get to see Santa and for me that bad. We made it home in time for grandpas deep fried turkey.On this Thanksgiving we have realized that we are thankful for being home if only for the moment. But most of all we are thankful for being alive,being able to fight,for friends and family and for the love you all share.Thank you all for being strong for us and for your good wishes and your kind words to get us through...WE will be back at the hospital tomorrow 7am if all is well we will be able to stay home on iv antibiotics and not return until tuesday when we will be admitted for our last round of high dose chemo and last planned in-hospital stay. Nov.21 Day 4 Were tired and we want to go home...times 2...guess what we are still in the hospital... not shocked! Alexa is still being treated for a septic infection which means antibiotic for seven days through IV. We are working on a home aid so we can go home. She will come to the house and teach me how to do the IV. Working on the insurance part ...we will keep all updated.Happy Thanksgiving to everyone enjoy and appreciate having family together and being home . Lots of Love... Nov. 20 Day 3 Today was one of many long days. All cultures and test results are still comming up negative. But playing Dr. Ive come o realize that the abcess that she has in her butt has to be the cause of the infection. She's hanging in there, just very sad about Thanksgiving. As of now were still in the hospital on a 7 day antibotic treatment. She also gets her 2 intermuscular shots and one nuprogen shot. One day at a time. Until tomorrow. Nov. 19 Day 2 We made it up to the fourh floor, our Oncology home tonight at 9. Alexa looks and feels perfectly find now. During our second day in the PICU we saw more Drs. than I can count. But the problem is that they all had something different to say, no two were alike. The good part is all the test that they have taking since we came back the other morning have come back negative. The bad part is that we still have no answer on what was going on and what caused her condition. So except for a little pain in the butt (no a real one) she is doing as good as can be expected for being back in so soon. I will keep you informed, whenever I get the information... Nov 18 Day 1 Alexa was brought to the ER at 1:30 am running a temperture. It turns out she was tacky cardia, her heart rate was to low and they needed to get it up before she crashed. She is now resting comfy cozy in the Ped ICU, connected to lots of machines and meds. They had to do a second access line and believe that there is an infection in her port. If true possible surgery to remove her port and eight days later replace with another access line. She needed platlets and possible plasma. This is not what we needed right now, she only wanted to be home for thanksgiving. Now most likely we will not be home. I will keep you updated... Nov.15 HOME
Yes we made it home. Alexa's 1am level was 0.11 That was only 1 tenth away from where we needed to be.Trust me at 2:30am I was ready to call for us to be picked up. But that didnt happen until 2p.m. when we reached the desired level.They didnt have to tell me twice I grabbed her and ran. Truth be told they still dont have any answers to what happened. Until I get some sleep im not even gunna try to think about it. Bad news in all this is that Alexa's levels are very neutrapenic. She is at 30. Which means no contac with anyone.This is the lowest that she has ever been and is at highest risk for fever and infection. Which means back to the hospital. Isolation is ok for now because all she really needs is to try and regain her strength and her spirits. Lot of rest and all the good food she craves.(She just has to give me a little sleep)Our next DR.s appt. is on Tuesday.Thank you for all the thoughts and prayers, please keep them comming. I will update on tuesday as long as all stays well until ... Nov.14 Day 8 OK lets start with last night. Levels continued rising to 0.24. She had to have her inter-muscular two at a time leg injections of Chemo. and her P.O Chemo. We finished that at 11pm and when Alexa stood up she stepped on her port line and ripped it out of her chest.And thats where the night started...We spent the rest of the night running to the bathroom gotta love Lasix this week.Come about 1am when I thought nothing could get worse it happened. Some strange nurse that I was not familiar with showed up with IV med for Alexa.I didn't Know her and I started to question... To make a long story short, I realized that Alexa's hydration was not hers.I always check everything to a point that the nurses make fun of me, but I never checked hydration. It will never happen again I will check. All im going to say on the matter is that anyone who knows me knows that that I handled the situation. ALL DAY!!! Truth be Im really scared and worried about the levels, but the good news is that they started to come down this evening.Our next drawn level is at 1am Im waiting.All I can say now is that the levels have to go down because the Dr.'s have no idea why this is happening with the increase of the methotrexate in her body. So as of now we know that this is rare and we are playing a guessing game as how to treat this. Please pray for us and the hospital staff (they have to deal with me) and let thease levels go down. Until tomorrow...
Nov 13 Day 7 Today has not been a good day at all. Ealry levels this morning were at .14 (needing a .1 to go home.) Her blood levels dropped so she had to get a trandsfusion today. With that she is fighting sores going to her stomach. We were looking for good news this afternoon and it didn't come. Her levels went up. The Drs. called it rare to happen and it had to happen to us, so they where re-testing them again this evening. The second set of levels came back even higher. I am at a loss of words. We need the MTX levels to go down for tomorrow because we can't take it here any more. But we will fight through this rough patch and be home soon. Nov. 12 Day 6 We're tired and want to come home. Predisome and hydration are not our friends. We had a real night and the day has not turned out much better. Her levels had not reach the release point so we cannot come home today and the mental exhaustion has reach a all time high. The water retention and the effects that are comming with it has made Alexa a very and I mean very unhappy camper. The release point can't come fast enough for us. Looking for good news tomorrow morning (or should I say praying). Keep the prayers comming as we try to keep our spirits up as high as we can. Nov. 11 Day 5
The days are getting longer and the nights never end. Does that make any sense? Well nothing does in my world! We got Alexa's K levels back to normal, her calcium levels are also moving back up to normal, MTX (high-dose) is not at its right level so we are still on high dose hydration and excessive H2O retention which is causing some problems. High blood pressure kept me on worry mode all night. Extra lasix and lots of bathroom runs and I'm still just trying to take one day at a time. Alexa's spirits are very low, she wants and needs to go home soon. We need the tears to stop. I need to see some smiles. Keep praying. Until tomorrow........ Nov.10 Day 4
Today was another slow day. Pot. level was still low, her sugar level was high and we got a new one today, Alexa was retaining too much water and needed a little help with some lastix. Her MTX levels were 1.49, we need 0.15 to go home. Otherwise she was drugged and made comfy cozy for the day. Cranky has set in for the evening hoping sleepy comes before bitchy.I will keep you updated. Please keep praying for us. Nov. 9 Day 3
Another day finished. We had a good day, as good as it gets for having chemo. Alexa finised her high dose at 1:30 and continued to sleep all day long. All numbers are good except for low pot. level, once again. We will work on that for tomorrow. Now we just wait to clear the chemo and go home. Until tomorrow.... Nov.8 Day 2
Todays day went very slow.Alexa had a hard time passing last nights chemo which put some delay in starting her high dose today. We finally got started around 1. So aside from the normal sleeping all day she is doing good for the moment. Lets let this one go smoothly.Until tomorrow. Nov.7 (Stay #4) Day 1 Yesterday didnt make it as far as levels went so we had to wait another day to be admitted for in-patient treatment. We are here minus one due to the fact that someone we wont say any names (Brian) got sick and is banned from us.Otherwise everything else is good and we will keep you updated. Oct. 30 We were all ready for Alexa's next round of chemo and in-hospital stay, but when the blood work came back, the bad news came with it. Alexa's neutraphil count didn't get to the level that it needed to be for treatment. She was only able to get her intermuscular shots. After a little in hospital trick or treating she had to come back home to her world of isolation due to her still low levels. What this means is that her treatment gets postponed until her levels reach atleast 750. Hoping that next week they are where they need to be so than she can get the treatment that was scheduled for this week. Until next Tuesday. Oct. 23 Alexa went to see the doctors today. She had some blood work done and got her intermusclar chemo shots x2. Good news the doctors survived the shots and she learned that one leg only hurt when she got the two shots at the same time because the body only can process one pain at a time. The bad news is that her neutrophil count was way low making her nutrapenic meaning she has no immumity to anything and is at high risk of getting sick. We are hoping that her level rises by Tues. when she is due for her next round of chemo as an inpatient.
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