Fighting 1,513 days And still fighting strong!! Both girls are still stuffy :( But they are both eating , drinking and playing just fine but they both seem a little cranky the past couple of days . We have been keeping them both home and will continue to for all. To much stuff going around 😷 Maddie doesnt go to clinic until the 20th, she will get her port accessed , her monthly pentamidine, urine test and her counts checked. We will also meet with her oncologist to discuss things. She will then start cycle 18😁 She will have her 3 month MRIs, echo , EKG And spinal tap sometime in February.🙏 We are praying that their is shrinkage or even gone!!! Stable is good but in her case we need shrinkage !! Her little body is tired and has been through so much !! She has only had 9 months off treatment in 4 years!!! But in the 9 months she still have MRIs and spinal taps every 3 months and monthly clinic visits so she may of not got any treatment she still was going through so much . Nothing has kept her down for very long , she always gets right back up and fights stronger than ever!! This little girls inspires me and so many others!! She is my hero !! She is truly the definition of strong and brave!! This was our week in 2011 When Maddie was only 4 months old and our lives changed forever!!! The words no parent should ever have to hear !!!! New update as of 1/7/11 at 5:30pm. After surgery the doctor came and talked to us they removed all the tumor and they wont know if its benign until next week. She did lose a lot of blood(2 pints) which they gave her transfusions but she is doing good. They said they wont know if she has weakness or paralysis of her left side until she wakes up. Later 1-7-11 We just got a call that she is waking up more and that she was moving her left arm up and down< and before we left she was wiggling her left toes! she is doing well and she is on the road to a full recovery! We r so greatful for all of our family and friends who are with us through this whole thing, we love you all so very much! 1-8-11 Madison is recovering from her big surgery yesterday with some discomfort, alot of discomfort!!! They are giving her pain medication to try to help her feel comfortable. She is having some complications with her eyes, which they think is due to all the medications,but will not know forsure until a few days! We are still waiting to see the results of her tumor removal from pathology which we wont know anything until Tuesday.Please keep her in your prayers!!! 1-9-11 Madison still is having some complications with her eyes from surgery, which they think is caused from the swelling due to the surgery on her right side! They put her on a ECG monitor for 24 hours to monitor her brain activity because they think she could be having seizures! Just had a catscan done today and it looked ok! Still waiting to here from pathology about the tumor that was removed, we should here back by tuesday! Please keep praying for her! Thank you 1-12-11 We recieved the results yesterday... the pathology came back that it is cancer! it is called Choroid Plexus Carcinoma. We will not know what the next steps are until Friday when they meet with the tumor board to discuss her case and the best treatments are for her!She is doing pretty good her eyes are doing a little better and she even smiled today for mommy and daddy:)She is a very strong little angel and she is doing as well as expected in this circumstance. We will keep you updated as we know more.Please keep us in your prayers This was our year 2 years ago this week..... 1-5-13 Well we had to bring our lil Avah to the ER last night she woke up with two of her lil toes red and swollen apparently she had what they call a hair tourniquet it was wrapped around two of her toes and they had to use a scalpel to get it unrestricted ! We had went into her drs that morning and they pretty much said it was fine just watch it! Im so glad we made the call and took her in to the ER bc it was really bad. Shes doing better today , still pretty red and swollen. We are hoping for a very uneventful weekend!! I dont want to see any drs or drs offices or hospitals . Unfortunately we will on Monday bc Maddie has her MRI of her brain and spine and also a spinal tap under general anesthesia at 11:30 but we need to be at clinic around 10 for labs. Maddie is feeling okay still very tired and not eating much but she is drinking good :) 1-6-13 Praying that her scans look good and fluid is clear of cancer cells and that this chemo is working and she will be cancer free!! Praying that the procedure and the scans go without any complications and she tolerates the anesthesia well The nurse called us with the MRI results... No evidence of tumors along her spine:)) but her two brain tumors are no change which means there stable! We hoped for them to be smaller !! So we will talk to the dr to see if we will be changing anything or keeping it the same. No news on the spinal tap yet but Im sure we will get those results in a couple of days. We go in on Friday for her 3rd round of chemo which we will be inpatient til at least Tuesday! 1-8-13 Okay the clinic called me back today and apparently what the nurse told us yesterday was off the report from the radiologist and Maddies dr didnt even look at them yet! So the dr measured the tumors on the scans and they are smaller:)) yay the treatment is working!!! He is very happy and feels good about this treatment Maddies on:)) we will continue on this treatment for now! Her spinal tap also came back clear, no evidence of disease :))) Maddies dr is also sending her scans to another dr out of Boston , this dr specializes in her cancer and they are working together to help give my daughter the best treatment possible. Thanks for all your prayers and positive thoughts! Please continue to keep Maddie in your prayers! 1-10-13 Tomorrow is Maddies 3rd round of inpatient chemo! We have to be at clinic for labs at 11 and then wait for her labs to come back to make sure shes cleared to have chemo and then we wait for a room on the 9th floor which we will stay 24/7 for 5 days! Praying that she tolerates this round with no complications! 1-11-13 We got into our room around 4:30 , we are in room 909! They havent started chemo hopefully soon, her urine has been ready since 5:30! They gave her one of her premed but still waiting on three more! Praying and hoping she tolerates thus chemo well with no complications!! She had a special present waiting for her from a very special person when we got to the hospital.. A iPad :)) so now she can watch bubble guppies 24/7 ! Shes very tired and testy so Im hoping they can start the chemo soon so she can maybe take a lil sleep! I will keep everyone posted Please continue to pray for our lil angel PreciousLilAngel Home Updates Photos 1/12/13 6:15AM 1/12/13 Updateclick to collapse conten They started chemo at 9:30 last night which goes for 4 hours! We were hoping to get it in earlier but that didnt happen:( Maddie did okay through the night but she did toss and turn all night and of course you have the nurses and techs that come in all hours:( so when the tech came in at 5:30 to change her diaper Maddie started to vomit my poor baby:( so they gave her Benadryl and zofran so hopefully she will be okay now!! Praying for a better day Maddie is not having a good day at all She is very cranky and tired and not feeling good shes been a basket case all day!! To top it off she some how tore her end cap off her line! So she may need another port placed bc its not flushing or drawing:( please pray that it works! Well her port is working now! Thank The Lord !! So they gave her some antibiotics just to be safe to prevent infection in her port. They also gave her another dose of adovan to help her bc she is just not feeling good:( praying the rest of the night and inpatient stay is better with no more complications! We are getting discharged sometime today:)) her numbers got low enough so yay!!! She had a better night she slept pretty good to :) Im just so happy that we get to go home! I miss my lil Avah❤ we still have to see the dr and her her dose of iv pentamidine that she gets once a month and get our clinic appt and her next admission date. Her dr said they are planning on doing this round and another round of these two chemos and then do another MRI and then go from there . Plus he waiting for the dr in Boston to receive all her records and MRI and then see what he recommends doing too. Im just so excited that we can go home and sleep in our own beds and Maddie feels better much faster at home:)) 1-16-13 We just got home and Maddie is napping now! We go in on Friday for labs to check counts and we return on the 25th for her 4th round of chemo! She is so happy to be home and In her own crib:)) We have endured so much .. So many ups and downs and everything in between . We have held on by a thin string these past 4 years but the one thing that has kept us going is how strong our Maddie boo is. She amazes me everyday !! She continues to show us that she will never give up!! Her strong will is what has kept her going. I know that she will finally beat this once and for all !!!! We have all of you fighting right along side of us. Thank you and God bless you all!!
Posted on: Thu, 08 Jan 2015 04:52:01 +0000
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