Maddie's Progress
Sunday, June 22,2008 (9:00 AM) provided by Abbie
Day +235
Maddie continues to do really well and we cannot be more thankful! On Thursday the 19th it was one year since Maddie had her scans and we realized that something was wrong. What an extremely hard, emotional, roller coaster year it has been and to be honest we are so thankful for it to be over. Brian and I decided that since last year was an extremely devastating day this year we were going to have nothing but FUN. Maddie said that she wanted to go boating so we did. Maddie wanted Morgan our amazing babysitter to go with us so she was lucky enough to be in the cold water with the girls! After a stop for an ice cream we had one more surprise for Maddie. Most of you may not know that Applebee's is Maddie's favorite place to eat and since transplant she has not been able to eat inside the restaurant (only take-out) and she says it does not taste the same. I told her that we had to run to the grocery store and in the car we asked her if she would like to go to Applebee's and her first responce was she her had mask!! I told her "No Mask" and the look on her face was priceless! What Maddie did not know was that I had already arranged that our families were already there to celebrate with us. It was a great end to a great day!!!
The Ride for the Children was on Saturday, June 14th and it was a great success. They had over 60 bikes participate and the weather turned out to be wonderful which was great! Events like this help raise awareness of the wonderful things that Maddie's Hope does for people and for me that is extremely important. I wanted to thank Paul and Gail Corril, the Mason Hog Chapter, Aces & Eights and all of the volunteers that helped with the event.
Maddie's next scans are July 7th and 8th. Please say a quick prayer that Maddie will continue to be cancer free for good. She is truly an amazing child and has gone through so much in her short 7 years and she deserves only the best in life. A life that has cancer in her history not her present or future. I really believe you can help make this happen by continuing to pray for her and the other children that are faced with this horrible battle.
Tuesday, June 10, 2008 (8:45 PM) provided by Abbie
Day +223
Hello! I wanted to let you all know how great Maddie has been feeling. Her cough is completely gone and we pray it stays that way. Since it appears to have cleared up with the antibiotic she took her docotr will hold off getting her scanned until her 9 month scans which is July 7th and 8th. Please continue to pray that her cough was from an infection and that she continues to feel GREAT!!
The annual "Relay For Life" was this past weekend and as always it was a huge success. Thanks to everyone that was on the Maddie's Hope team and for everyone that came out to support us. As most of you know it rained most of the morning on Saturday and I kept telling the girls to do the rain dance and make it go away. Maddie firmly said that she KNEW it would stop raining when the relay started because she was going to have FUN!!! and she was right!! The rain stopped right before it started and the weather was perfect. The relay would never be as successful as it is if it was not for the hard work of my mom and my Aunt Kim. So again...thank you to all of our team members for their hard work and dedication to Maddie's Hope and what we stand for!!!
Yesterday was an extremely hard day for a family that we met during Maddie's transplant. Jonnae Taylor passed away early in the morning with her mom next to her side. The strength that her family has is amazing. Knowing that this ugly disease continues to take the life of so many children breaks my heart!!! It also reminds me how extremely blessed we are to have Maddie doing so well and cancer free. I will never understand why these children have to face this horrible disease but what I do know is it will take all of us to help find a cure so the pain and suffering can stop. Please pray for this family to get through this difficult time in their lives.
one last thing...do not forget to join us this weekend for the "Ride for the Children" motorcycle bike run. If you do not have a motorcycle please still come and join all of the activities that they have planned. You can find out more information on the events page. Hope to see you there!!!
Tuesday, June 3, 2008 (7:30 PM) provided by Abbie and Maddie
Day +216
Hi everyone! Maddie decided to join me this evening and let everyone know how her clinic went today...
We had a good day we goed to the zoo. Mommy & Morgan & Emma & Jackson & Me went. My platelets were 125,000!!!
How exciting is that...125,000! All her labs looked great today. Maddie is not scheduled for labs until her next round of scans which is July 7th and 8th. The only issue we had today was that her weight went down quite a bit and her x-ray showed "stuff" in her right lung where her cancer had been. The good news is that the doctor is not worried so that means that I am not as well. She will start an antibiotic this evening that should take care of any infection that is there. Maddie looks great, is feeling great, and is ready to enjoy her summer.
Please continue to say an extra prayer for Maddie. Being at the hospital today reminds me of the many difficult days she had to endure. Please pray that the "stuff" is infection and that she will continue to be cancer free for life. Also think of all of the other children that continue to go through difficult times in their life. I hope to see all of you there this Saturday at Middletown High School to help support the Relay For Life and to find a way to end the suffering that this horrible disease brings to families each and everyday.
Be sure to look at the updated pictures of Maddie. Like I said before she looks great and her hair is coming in quickly which makes Maddie extremely HAPPY!!!
Sunday, June 1, 2008 (7:30 AM) provided by Abbie
Day +214
Hi everyone! Someone from work reminded me that I had not updated for sometime so I really will try and do better. (thanks Kay) Great news is Maddie continues to feel great! The only issue she is having is that she still has that annoying cough that will not go away. I e-mailed her doctor and he wants to get a quick x-ray on Tuesday before her appointment. I know it is nothing but having him tell me that makes me feel so much better. She also will be having labs drawn and her medicine that she gets every 28 days on Tuesday.
Our camping trip was great! Everyone really enjoyed themselves and we all cannot wait to go camping again. Maddie even held a snake when we were there. Brian is scared to death of snakes so she really impressed him as well as everyone else! I will be sure to get some updated pictures on here so you can see how beautiful she is looking with her hair growing back.
Please continue to pray for Maddie and every child that has to experience cancer and may other diseases. Also continued prayer is needed for the Taylor family. Jonnae has limited time here on earth and her family could really use some extra prayers for support and healing.
Friday, May 23, 2008 (6:45 AM) provided by Abbie
Day +205
HELLO!!! Wow... it has been awhile since I have updated. Sorry about that...always remember that no news is good news with me. Maddie had been doing GREAT!!! She is feeling good and acting like a normal 7 year old without that crazy central line. On Tuesday she had labs for the first time since it has been gone and she did great. A finger stick with a couple of tears resulted in Maddie having the best lab results we have seen in awhile. PLATELETS 75,000!!!!! Her liver numbers were in the normal range for the first time since she got VOD. Everything is looking great and we are so thankful!!!!
Maddie's Hope "Sharin A Ride For A Cure" was last weekend and it was a huge success. Thank you to everyone that took the time to come out and support it. We were so lucky to have beautiful (a little windy but beautiful) weather. Ed, Denise, and all of the generous volunteers put on another great event and everyone seemed to enjoy themselves. We are now working on last minute things for the Relay on June 7-8. I hope you can come out and help support this great cause.
We are getting ready to head out camping for the weekend. Since we missed most of the summer last year with Maddie's relapse we plan on making up for that this summer. Brian and I are so thankful to have the opportunately to be with the kids and spend some much needed family together.
As always thank you for all of your prayers and support. Please continue to keep Maddie in your prayers. I also ask that you pray for a girl named Jonnae. We met her and her amazing mom during transplant and have found out the cancer is back and there is nothing that can be done. Please pray for her family to have the strength to get through this difficult time.
Thursday, May 8, 2008 (6:45 AM) provided by Abbie
Day +190
I wanted to quickly update and let you know that Maddie came home yesterday afternoon and is doing great! No central line, no fevers, and is ready to be a normal kid again. We have labs scheduled in 2 weeks and will not be back to Children's for 4 weeks. Dr.Wagner said she looks great and is extremely happy how healthy she is. The ultrasound from Monday showed nothing wrong with her liver or spleen which means that her platelets are just being slow to recover. Hopefully the past couple of days were just a bump in the road for Maddie. Thanks for all of your prayers!
Tuesday, May 6, 2008 (10:15 AM) provided by Abbie
Day +188
Hi everyone! I wanted to give a quick update on Maddie. The central line has been removed and the surgery went well. We are scheduled to remain in the hospital until tomorrow unless the fever would return. She is feeling great and is really having fun seeing all of her old nurses and playing in the playroom. The visits to the hospital always make me feel great because of all the time spent here Maddie knows a lot of people and they are always happy to see her. What is funny is during these hospital visits her platelets have ranged from 44,000 to 66,000. With the jump yesterday she did not have to receive a platelet transfusion before surgery which is great! We will be seeing her normal doctor sometime today to determine the next time he wants to see Maddie. Honestly.. if we have to be in the hospital having Maddie feeling so good and not having problems is the best way to be. I was extremely frustrated that we had to be here but I decided that Maddie would not end her journey without a bang so here we are..... We pray that tonight is truly her last night in the hospital and whatever was causing her fever is gone!! Thanks fo the prayers and I will keep you updated.
Monday, May 5, 2008 (7:15 AM) provided by Abbie
Day +187
Well this past weekend was definetely a surprise for us. Maddie ran a low grade fever Friday night but appeared to feel fine. Brian and I tried to convince ourselves that it was nothing serious and gave her Tylenol and she felt better. When I got home from work on Saturday the fever was a little higher so I decided to call Children's just to let them know because of her central line still being in. (the last several dressing changes I did on her line I did not like how it looked!) They wanted to see her in the Emergency Room so we packed up the other kids like old times..dropped them at my parents and headed to Children's. Close to 6 hours later (1:30AM) we were heading home. They took labs, took cultures of her line, and gave her an antibiotic. Not once did they ask to see her cental line even though I told them my concerns. When I was leaving for work at 5:15am I took her temperature and realized that she had yet another fever. I called Children's once again around 8:30 am and they wanted to have Maddie come back to the ER for more labs and another culture. By 10:30 am we were back at Children's Hospital ER. They decided to admit Maddie, put her on a stronger antibiotic, and try to schedule an emergency surgery to remove the central line. Unfortunately the surgery did not happen and we are waiting to find out the time for the surgery today. Another sleepless night at Children's Hospital was not what I had planned.
I am once again faced with residents that know absolutley nothing but yet think that they do. They may be smarter then me in other aspects of life but not when it comes to Maddie!!! They were going over her chart and stating their concerns about things that had not even happened to Maddie (nose bleeding, etc.) We finally realized that they were talking about another patient. Then this morning at 5:30am I asked if we could get the things that were scheduled tomorrow done today so if we do get to go home today we will not have to come back yet again tomorrow. I was told that I was asking a lot but he would certainly check but was not hopeful. I told him that I thought it was asking too much for us to come into the ER, spend 6 hours, be sent home in the middle of the night, and then asked to return less then 7 hours later because they chose not to look at her line. Even after I had voiced my concern about a possible infection starting in her central line. Then we had to sit in the Emergency Room another 5 hours yesterday before coming to the floor. He left after this conversation and I have not seen him since!
The good news about this entire experience is if the fevers are related to her central line we obviously have caught it early and are getting it removed! If they are a result of something else she has received some strong antibiotics to help fight the source. Maddie's good news is that she gets to go to the playroom during this visit because we are off of the transplant side. Until it opens the amazing team from Child Life already loaded up Maddie's room with her favorite games and activities to keep her busy. Please say a couple extra prayers for her as she heads into surgery. I will update when I have more news.
Wednesday, April 30, 2008 (8:00 PM) provided by Abbie
Day +182
We got the results from her last blood draw earlier this morning and got good news. Her crazy platelets that continue to give us problems did go up from 42,000 to 56,000. (we will take it!) All other labs looked great! Maddie is looking forward to surgery next week to remove her central line for good. We had her last dressing change tonight and we both could not be happier! Seeing your child cry because of something that you are doing that is causing her pain is not a good feeling! She continues to feel great which is what is most important! Even with the unfortunate news she received about not being able to return to school this year Maddie is looking forward to start taking her lessons in her classroom next week. As a result of the time she missed while in the hospital she will have to continue school into the summer to get caught up and move on to the 2nd grade. Small price to pay for being healthy and cancer free!!!
Over the last several months people have asked what they could do to help support Maddie. Well...American Cancer Society's Relay for Life is just around the corner and we welcome anyone that would like to help Maddie reach her goal. To date Maddie's Hope has contributed over $60,000.00 to American Cancer Society. The relay will take place Saturday, June 7th and 8th at Middletown High School. (see events link for more details) Again this year Maddie's Hope is dedicated to not only Maddie in her continued fight,but also in honor or in memory of all who have been touched by cancer. We participate in this event each year because unfortunately too many people have been touched by this horrible disease and I feel strongly that together we can make a difference. If you would like to donate in honor of Maddie please send a check payable to Maddie's Hope or American Cancer Society to 2061 Blair Drive Springboro, Ohio 45036. All donations are tax-deductible and any amount is welcome and appreciated.
As always...thank you all so much for your continued support for Maddie. Maddie truly could not have make it through this last year without all of you and your many prayers. June 19th will be 1 year since we found out the devastating news that the cancer had returned. We look forward to celebrating this anniversary and knowing that Maddie has once again beat this horrible disease and won the battle for good!!!
Monday, April 28, 2008 (7:00 AM) provided by Abbie
Day +180
Hello!!! I wanted to give a quick update on how Maddie has been doing. She continues to feel great!!! We just returned yesterday from a long weekend camping trip and all had a great time. Maddie got to act like a normal 7 year old and it was wonderful to watch! This past Tuesday we got the results that her platelets went back down to 42,000 but all other labs looked great! The great news is that the doctor agrees that the central line can be removed (with a little pressure from mom) and her line will be taken out on May 7th. YEAH!!!! Maddie is so excited. We have labs this Tuesday and hopefully we will see the platelets jump back up. Then on Tuesday, May 6, we have a full day at Children's and then surgery on Wednesday. I am so excited to not have to stress about what her labs results show each week. It is obvious that her platelets are going to take time to heal but not having her central line allows Maddie to a normal kid. A kid that does not have to worry about platelets, her weight, or worring 24/7 about her central line being pulled out.
Saturday, April 19, 2008 (7:00 AM) provided by Abbie
Day +171
Hello everyone! We got more great news this week that I wanted to share. Maddie's labs on Tuesday were the very best they have been since transplant. (including PLATELETS!!) Her platelets finally jumped up to 65,000. YEAH!!! One more week of her platelets getting higher and I am going to 'highly recommend' us getting an OR appointment to have her line removed. Her next labs that are scheduled are for Tuesday so please say an extra prayer for the platelets to continue to rise!!!
More great news... Jackson got his x-ray taken that was missed when he had his scan and it was clear as well!
The only news that was a surprise is that Maddie still has to be in isolation for a little longer. Her immune numbers are right where they should be at 6 months post transplant but not high enough for the horrible mask to be gone. It looks like returning to school this year might not be able to happen unfortunately but the teachers have been wonderful and hopefully she will be starting 2nd grade next year with her friends. One surprise is the doctor did not want Maddie to swim in lake water this summer. For all of you that do not know boating is something that we do as a family and her not swimming in the lake just does not work for us. After a heart to heart we both compromised resulting in Maddie cannot go under water until her next set of immune numbers which will be drawn in July. Bottom line is that Maddie still needs to be extremely careful around anyone that is sick but she also has to live. She has had to give up so much over the last 10 months and hopefully soon worring about if someone is sick,always double checking if she have her mask, not being able to run to the store because of too many people will be in the past.
As always thank you so much for all of your support and prayers for Maddie. More great news is that David (Brian's cousin's son) is at home doing great! Also Dayne an amazing little boy that we got close during transplant has returned home this past week. YEAH!!! His numbers are acting up so please say an extra prayer for him!!!!
Thursday, April 10, 2008 (7:00 AM) provided by Abbie
Day +162
Maddie's scans were CLEAR!!!!! YEAH!!!! This means that her next scans will be in 3 months and they will happen every 3 months for the next several years. As for the platelets and the removal of her central line Dr. Wager talked to a BMT doctor and they are not too concerned about them taking so long to come up. They feel because of her previous treatments and the intensity of the transplant they are just slow in recovering. I had to remind him that summer was almost here and I really didn't want Maddie to have to miss out on another summer and he agreed. We will give it 1 more month and then schedule the removal of her line. Maddie was extremely happy when she heard that!!! Still are waiting on her immune numbers but hopefully they will come soon. Thanks again for all of the prayers and please keep them coming. Maddie cannot stay Cancer Free without them!!!!
Tuesday, April 8, 2008 (1:00 PM) provided by Abbie
Day +160
Hi everyone! We are sitting at the hospital waiting for the doctor to come back and tell us the results from her scans today. The MRI of the brain yesterday looked great!! The experience was not so good but the scan was clear and we are extremely thankful! Jackson's scans were clear as well. They forgot to schedule an x-ray for him so we will have to get him in this week for that. Her labs looked great except for her platelets that went down to 46,000. Dr.Wagner is checking with Dr.Jodele who was Maddie's BMT doctor to get her opinion on them. I am convinced that they are just SLOW and taking their sweet time to come up. The only problem is that boating season is right around the corner and she cannot go swimming with her central line in. I am confident that it will be out before then... Her immune numbers are not back unfortunately we will have to continue to wait for those.
Maddie's Hope BINGO night was this past Saturday and was a huge success. Thank you to all that came out to support Maddie's Hope and enjoy the fun. The last amount I heard was over $1000.00 raised and it really was a lot of fun for everyone that was there. My Aunt Kim and her coworkers from Kohls did a great job on it. If you missed that event we hope to see you at one of the many events coming up.
As soon as we get the results of her scans I will update. Thanks so much for the many prayers said for her and Jackson.
Monday, April 7, 2008 (7:00 AM) provided by Abbie
Day +159
I wanted to give a quick update on Maddie. She continues to do great!!!! Her labs on Tuesday were the best she has had since before transplant. Platelets jumped up to 52,000!!!!! Today we have her MRI of the brain scan and Jackson's first scan. Tomorrow is her PET and CT scan. Please say a quick prayer that her labs continue to loook great, scans are clear, and her immune numbers looked great. I promise to update as soon as we know the results on tomorrow.
Saturday, March 29, 2008 (2:00 PM) provided by Abbie
Day +150
Hello everyone!! Maddie has had a wonderful uneventful week and that is just how we like it to be. She had labs drawn on Tuesday and her platelets remain solid at 47,000. They seem to like the 40,000 range and refuse to rise!! The good news is that have not dropped any lower so we again have to wait! As for her immune numbers we hopefully should get some of the results by Monday or Tuesday. As all of you know I am not that patient so the wait is killing me. As soon as we know anything I will be sure to let you know.
Brian and I got pizza for the families on the BMT floor this week and I am so glad we did. The great news is that Dave (Brian's cousin's son) looked great and is planning on coming home on Monday. Sadly we saw families that were there when Maddie was and unfortunately are still there. The visit reminded me how blessed we are to have Maddie at home and feeling as good as she is. The 8 weeks we were at Children's felt like eternity to me but there are so many families that have been there longer. It reminds me that I really should not be complaining about her platelets taking so long to recover when other parents are STILL praying that their child just make it through the night. It was nice to give a few parents the hope that even though times are hard Maddie is proof that there is light at the end of the tunnel. For anyone that needs a reality check Children's Hospital is a wonderful place to remind you how blessed you are to have healthy children. Just remember..... no one but God knows what tomorrow will bring so be sure to hug, kiss, and tell your children how much you love them DAILY!!!!!!
Sunday, March 23, 2008 (6:15 PM) provided by Abbie
Day +144
HAPPY EASTER!!!!!!!!
I hope you all had a wonderful Easter spending time with your family and being thankful for everything that you have. We had a great Easter with everyone being HEALTHY and HAPPY! We went to church and then enjoyed a nice lunch at our house followed by a Easter egg hunt for the kids. Maddie continues to feel and look great! Her labs this past week were good and her platelet count came up from 42,000 to 49,000. It is still low but at least going in the right direction so we will take it!!!! Maddie gets another set of labs this Tuesday and we will also see where her immune levels are. This will determine when she gets to return to school and not be kept in isolation. Please say a quick pray for her that day. Maddie is so ready to get life back to normal and so are we. She is extremely excited to have the "MASK" burning party as soon as she can stop wearing them. (can't say I blame her!!) I hope you all have a great week and I hope to update with great lab results soon!!
Sunday, March 16, 2008 (2:45 PM) provided by Abbie
Day +137
Hello everyone! The last week was extremely busy but overall a great week for Maddie. She is still feeling great and extremely excited knowing that camping with the family is right around the corner. Maddie had home labs this week and her counts continue to stay solid except for her platelets. They have now dropped to 42,000. (reminder normal is 135,000-150,000) The doctors still appear not to be worried but my patience is wearing out!! We are in the 5th month from transplant and I feel like they should be higher then they are! On the other hand...I am so thankful that platelets are the only concern we have. Knowing some of the problems that other families are still being faced with reminds me daily how blessed Maddie truly is. Maddie has home labs scheduled again on Tuesday and hopefully we will see a rise in her platelet count. We still do not have plans on returning to the hospital until April 7th and 8th for her next rounds of scans. Jackson has his first scan scheduled on April 7th. I know that we will get great results for both of them!
We have a lot of fun and exciting activities planned for Maddie's Hope this year. I hope all of you are able to come out to the events and met Maddie if you have not already. We are so blessed to have you support Maddie over the last 10 months and we would love to met all of you. I will be sure to get the "EVENTS" link updated this week so you can see what Maddie's Hope is doing to make a difference.
As always...thank you so much for all of your prayers and support. I cannot tell you how great a feeling it is when I hear people tell me that they check this site daily to see how Maddie is doing. Please continue to say a prayer for Maddie and ask that her platelets start to come back up to normal range.
Wednesday, March 5, 2008 (6:45 AM) provided by Abbie
Day +126
I wanted to let everyone know how well Maddie's visit was at the hospital yesterday. CT scan looked GREAT!!! No signs of the "junk" that they mentioned last time and of-course no signs of tumors!!! Blood counts all were great except for her platelets that still are staying around the same. (we will have to wait to get her central line removed) She looked so good that her doctor does not plan on seeing her until her next round of scans which are April 7th and 8th. We will continue to get labs from home each week to see what her platelets are doing.
Jackson's 1st birthday is today which is so hard to believe!! Our baby isn't really a baby anymore. He has turned into a 27lb walking machine over the last few weeks. We really have so much to be thankful for. Everyone is happy and HEALTHY and our crazy life has gotton back to normal! I am confident with the many prayers that are continued to be said for Maddie she will remain healthy!
Some other great news is Maddie's friend Morgan is down to her last chemo. treatment!!! Also Dayne the adorable 2 year old that we have grown to love had his engraftment numbers rise. YEAH!!! Please say an extra prayer for David which is Brian's cousin's son which started his stem-cell transplant last week. He is a fighter and I know will make it through the transplant with flying colors!!! As always...thank you so much for your continued support for Maddie!!!
Wednesday, February 27, 2008 (10:00 PM) provided by Abbie
Day +119
Hi everyone! I just wanted to give a quick update on how well Maddie continues to do. She has been feeling great and even with being stuck at home her spirits are still high!! She cannot wait to burn the dreaded mask that she has to wear when she goes places but I keep telling her not too much longer. We had home labs taken on Tuesday and her platelets went up from 44,000 to 48,000 which is good! All of her other labs looked great! She is scheduled for a repeat CT scan on Tuesday and will go to clinic to see her doctor. We hope her platelets do a huge jump so we can schedule the removal of her central line. As always most importantly we pray that the scan is clear and shows no signs of any problems!
cute story...This morning the girls and I were talking as I got ready for work. She was explaining to Emma that I had cancer when I was 4 years old. Then she said that she had cancer when she was 3 years old and when she was 6 years old. Emma of-course said "Maddie I thought that you still have cancer!" Maddie's response was "NO EMMA!!! I had it when I was 6 but my transplant made me cancer free forever and I don't have to worry about it ever again!!! It brought tears to my eyes to see how confident Maddie was that she will be CANCER FREE FOREVER! I hope that when fear starts to take over my thoughts I think of this moment and remind myself how blessed we are to have her here with us and know that she has beat cancer for good!!
I need to ask for prayer for a family that was I has mentioned previously. Kevin who was 15 years old lost his fight against cancer this past Sunday. Please pray that his family and friends get through this difficult time. As always say an extra prayer for Maddie so she will continue to have won her battle against this horrible,ugly,and unfair disease.
Wednesday, February 20, 2008 (6:15 AM) provided by Abbie
Day +112
I wanted to give you a quick update on Maddie hospital visit yesterday. The doctor was absolutely thrilled with how well Maddie looked. Her weight came back up to 19.6 and Maddie was so excited. She has really been working hard to get it up and I could tell was extremely worried. Her crazy platelets went down to 44,000 which is quite annoying! This means that we have to put off getting her central line removed for just a bit longer. Like I said to the doctor if this is the only thing we have to complain about we sure are blessed!!!! Her next round of scans are going to be scheduled for the beginning of April. Overall we had a great visit and are so happy to be seeing her oncologist Dr.Wagner again. I will be sure to update you soon.
Monday, February 18, 2008 (6:00 AM) provided by Abbie
Day + 110
Hi everyone! Sorry it has taken me so long to update. Life getting back to normal means limited time for me to get to this computer but I promise I will do better! Maddie has been doing great! Her hair is really starting to come in and she has been feeling good! She had labs taken at home on Thursday and we got great results. Her platelets are up to 50,000! YEAH!! All other counts looked good and stable. Only problem was that her weight is down by 1 lb. My return to work obviously effected that but she is working hard trying to get it back up since then. (I now have to call from work to bug her about food!) Maddie has a clinic visit on Tuesday and we hope to finally schedule the removal of her central line for sometime in the next couple of weeks. I will be sure to update you on how well her appointment goes tomorrow.
As always thanks for the continued prayers. In no time we will be getting her next rounds of scans and all of the extra prayers are always appreciated!
Saturday, February 9, 2008 (3:00 PM) provided by Abbie
Day +101
Maddie has officially made it to her +100 days since transplant and we cannot be happier! I was going to have a little celebration yesterday but with a lot of family members sick we enjoyed a nice night eating pizza and watching a movie at home. I think back over the past 100 days and it reminds me how lucky we are to have Maddie doing so well. There were so many difficult days and we are so blessed to have them behind us. Maddie continues to make us so proud to be her parents and this experience confirms that with her strength, determination, and with prayers being answered she can make it through anything that life throws at her.
Her labs came back encouraging as well this week. Her platelets are up to 34,000. YEAH!!!! Her magnesium was at least in the normal range and the remaining counts were good. The platelet count means that we will have to put off getting her central line removed for a few more weeks but we can handle that! Her platelet count continues to increase each week so we are thrilled. If she continues to feel good we will only have to have labs taken are home and it saves us a trip down to Children's this week. I cannot tell you what a gift it is to not have to make a trip to the hospital after spending as much time as we did at Children's over the last few months. Maddie is in such a great place right now and we are so thankful! Her beautiful, amazing eyelashes are back and her hair is coming in quickly. I think she is really sick of me staring at her so much but I cannot stop. I cannot express the amazing feeling of having her feeling and looking so good.
Please continue to say an extra prayer for Maddie and all of the families at Children's. One family that went through transplant at the same time as Maddie found out that his cancer has returned and have chosen to not have anymore treatments. He is not expected to live much longer and his family needs a lot of prayers right now. Another amazing family is still experiencing the roller coaster ride that this experience causes and they need prayer as well. You can never imagine how difficult the road is ahead when you are told that your child has a life threatening disease and I pray you never have to. Saying an extra prayer for the many families that have only takes seconds and Maddie is proof that it can make all of the difference so PLEASE think of them each and everyday.
Monday, February 4, 2008 (6:00 AM) provided by Abbie
Day +95
Hi everyone! It is hard to believe that we are so close to Maddie being 100 days post transplant. Her eye lashes and eye brows are back and her hair is coming in slowly! Her energy level and attitude have been great and it is obvious how good she has been feeling. I am starting back to work this morning and definetely have mixed feelings. Excited to get things back to normal but I know I will miss the kids alot! It has been extremely nice being home spending so much time with the 3 of them. Jackson will be 1 year old next month which is so hard to believe. Emma will be 4 in April and we have been working on her writing her name and recognizing numbers. She is really excited about her birthday and continues to ask everyone including Brian and I if we will be coming to her birthday party. We have a new sitter coming today to watch the kids and I just pray that everything works out and the kids really enjoy being with her.
Please continue to say a pray for Maddie. Her platelet count needs to continue to come up so we are able to remove her central line next week. Also continue to pray that the last 6 months of treatments were successful and that Maddie will remain cancer free forever! We cannot thank all of you enough for the support you have given over the last few months. You allowed me to be home with Maddie when she needed me the most and have brightened some extremely dark days with the cards and gifts. Most of all your prayers have helped Maddie get through the most difficult times and allowed her to stay here with us!!! THANK YOU!!!!!
Friday, February 1, 2008 (7:45 PM) provided by Abbie
Day +92
Great news!! Maddie had her MRI scan of the brain this morning and everything came back clear!!! After a long morning we went to clinic and got more great news. Her weight is up a little! Her platelets are at 26,000 (from 27,000 last Friday) but the doctors are still happy with that number. They continue to slowly...I mean SLOWLY come up but they will get there. All of her other counts looked great! The doctor thinks she looks great and is extremely happy with how well she is doing. She has been removed off of another medication which only leaves her taking magnesium and a vitamin. Not too bad at all!! We currently do not have a visit scheduled until Thursday, Feb.14 when she will be returning to her wonderful doctor and hopefully if her platelets are high enough will have surgery to remove her central line. We will not know that to do with all of our extra time not having to flush the central line everyday and take her medications.
Thanks so much for all of the extra prayers that were said for Maddie today. As I said before I really believe that Maddie is living proof that prayers work!!!!
Sunday, January 27, 2008 (2:30 PM) provided by Abbie
Day +87
Hi everyone! Maddie had good results from her labs on Friday. Her platelets are staying solid and climbed up to 27,000. Weight is still the same at 19.4 kg. She is eating good so hopefully it will start to increase soon. Her magnesium was low so we had to increase her dose slightly which thankfully is no big deal. Overall she continues to do extremely well! Maddie's energy level continues to be high and she is feeling great! Her MRI of the brain is scheduled for this Friday at 7:30 am. If nothing changes we will not have to return to the hospital until Friday.
I officially return to work on Febuary 4th. Hopefully getting back into the swing of things goes easy for all of ous. Please say a prayer for Maddie and ask for clear scans and good platelts for Friday. Due to the length and loudness of the prochedure Maddie has to be sedated which makes for a long day. Also please pray for an amazing family that we met during Maddie's transplant. Dayne's engraftment has lowered and we are praying that it will come back up soon!!
Monday, January 21, 2008 (4:30 PM) provided by Abbie
Day +81
Just wanted to let everyone know how good Maddie has been feeling over the last couple of days. Her energy level is wonderful even though she still has days that she needs a short nap. Her appetite continues to get better and better each day. She is still extremely skinny but with time I am confident that her weight will increase. We are so luckly to have her doing so well and are thankful that we are almost to +100 days from transplant. Maddie wil still have to be restricted due to the time of year but little by little can do more activities.
Please continue to keep Maddie in your prayers! We cannot thank you enough for all of your support!
Friday, January 18, 2008 (4:45 PM) provided by Abbie
Day +78
What a great day today has been. Clinic visit this morning went great! Maddie's platelets were up to 25,000 on their own!!! YEAH!!!! Her weight came up just a little to 19.4. Still low but it did not go down so we will take it! She looks amazing, is feeling great, and is cancer free....what else can we ask for?? Her MRI has been scheduled for Friday, Feburary 1st but we are hoping we can get an earlier appointment. We have discussed removing her central line which requires surgery and the requirements are for her platelets to be at least 60,000 so we will have to wait for that. Hopefully next week we will be returning to her wonderful oncologist doctor which means her bone marrow doctor is confident that all transplant concerns are resolved! YEAH!!!
That also means that I can return to work the first week of Feburary and we can get back to our fun filled action packed life! Maddie is enjoying getting back to school and hopefully soon she can start with some solo dance lessons. Her biggest question is when can she go to the store. We did take her for a quick grocery trip trying to get her to find some food that she wanted to eat. I was shocked how many people grocery shop on a Wednesday afternoon! She got some junk food which hopefully will get the weight back on her. (As before I will work on the fruit and veg. once her weight is solid)
Overall Maddie is doing great and we are so thankful!!! Thanks for all of your continued support and I will get some new pictures posted so you can all see how great she looks! Please say a quick prayer that Maddie's health continues to go in the right direction and my return to work is easy for myself and the kids. Also please do not forget all of the children that are going through a difficult time at Children's Hospital. I hope you all have a great weekend! Stay warm...it is going to be cold out there!
Tuesday, January 15, 2008 (10:00 AM ) provided by Abbie
Day +75
I wanted to share the GREAT news about Maddie's scans yesterday. There were no signs of tumor on either scan!!! YEAH!!! Of-course we knew that they would be negative but it is always nice to hear. Her platelets went up to 15,000 and are staying solid which is another prayer answered. All of her other counts looked great. They are not even checking her labs until her appointment on Friday. That will be the longest she has gone without getting lab results since before the transplant in October. Our baby steps are getting larger which is great!!! Brian and I were so proud of Maddie because she forgot to bring Momma (her beloved doll which has been through everything with her) to the hospital. She did the tests without her for the first time. We are still waiting for the scheduled time of the MRI of her brain. Hopefully that will be soon and we can put these scans behind us for at least a few months.
Thank you all for your thoughts and prayers for Maddie yesterday. She will be getting these scans at least every 3 months and I know that with your prayers and support we will get great news everytime!!!!!
Saturday, January 12, 2008 (2:00 PM) provided by Abbie
Day +72
Hi everyone! Everytime I type in her day count it is hard for me to believe that it has only been 72 days. Sometimes I feel like this journey has been going on for eternity. The only good thing is each day I see that there REALLY is an end to her battle! A wonderful person that I have met through this experience e-mailed me this.....TOUGH PEOPLE LAST...TOUGH TIMES DON'T!!! I thank god everyday that Maddie is tough and is ready to get her life back to normal!!!
Overall good news from our clinic appointment yesterday. Her platelets did go back down to 12,000 but they did not seem concerned. They explained that normal platelet counts can change hour by hour and at least they are staying above 10,000. That means that it has been one week since she received platelets and they appear to be recovering slowly but recovering so we are thankful. Her weight was down again but I know she will get that back up by Monday. We discussed several things that made me realize that we really are getting close to getting our lives back. First, the removal of her central line once her platelets get a little higher. A estimated time when she feels that Maddie would maybe return to school. (at least for 1/2 days) An estimated time when Maddie would be able to return to public places. Even discussing these things brought tears to my eyes! Who knows what I will do when they actually happen!!!!
I wanted to thank The Muse Machine for giving Maddie the opportunately to see Peter Pan last night. The producer Doug and his amazing cast and crew gave Maddie a night that she will never forget. Maddie received free box seats and was escorted in early so that she would not be around the public. She was able to go on stage and see the props and the cast even waved at her at the end of the show. After the show Peter Pan (herself) took the time to come and see her and gave Maddie her own pixy dust to have along with a signed autograph from the cast. (Maddie is a huge Tinkerbell fan) The show was absolutely amazing and I would highly recommend it or another Muse Machine production to all of you. Thank you all from the bottom of our hearts for being so kind and generous to Maddie!
Maddie's scans on Monday start at 8:30 am. Please say an extra prayer for her as she takes the first of many scans that will show us that the cancer is gone for good!!! Also pray for the other chidren going through hard times!
Thursday, January 10, 2008 (11:30 AM) provided by Abbie
Day +70
I wanted to let you know the GREAT news we received from the hospital yesterday. Maddie's platelets went to 16,000 on their own!!! That is the best news we could hear! Hopefully this is the turn for the better and her body will start producing them and she will not need anymore transfusions! We have her appointment tomorrow to see were they stand after not receiving platelets for one week. They have also scheduled her PET scan and CT scan on Monday the 14th. Please pray that the scans are clear! This all is just one more step to getting our life back to normal and trust me that is exactly what our family needs.
Tuesday, January 8, 2008 (12:30 PM) provided by Abbie
Day +68
Maddie had a good visit yesterday at Children's. Her platelets were at 12,000 and they decided to hold off giving her more to see what her body does. (fingers crossed it will continue to make more!) Her weight went back up from 19.6 to 20.0. Not much but we will take any increase we can get! She is really trying to eat lots of food but like I mentioned before her belly can only take so much. I placed her on fluids over the weekend so I think it helped with her being dehydrated. Overall it was an uneventful visit and those are the ones we like.... We have home health care coming out tomorrow morning to see where her platelets stand. I am praying they are still over 10,000 so we will not have to return until our visit on Friday.
Maddie is extremely excited today because she will be starting back with her school work. Her amazing teachers come to the house to work with her for about 2 1/2 hours twice a week. It is not what she wants which is to be in school but it at least makes her feel somewhat normal. As you know Maddie is extremely limited on who she can be around and where she can go. She has been wanting to see the movie Enchanted since it was released and because of her restrictions has not been able to. Yesterday my mom calls and tells me that the drive in was open and Enchanted was playing. I know... the drive-in in January sounds crazy but with the amazing warm weather I decided to give it a try and I am so thankful I did. It was perfect because Maddie didn't have to be around anyone and she got to watch the movie and eat all the junk she loves to eat! Emma and Jackson feel asleep but my mom, Maddie, and I really enjoyed it. It just goes to show that things happen for a reason (60 degree weather in January) and you need to take every opportunately to enjoy time with your children and make memories that last!!! That is one lesson that I am going to take from this experience and do better at!
I need you all to say a little prayer for a family that lost their son David Michael Plattner. I had not personally met this family but David had been battling the same cancer that Maddie had for 7 years and unfortunately lost his battle on Sunday. Hearing that any child has passed away is difficult but knowing it is from the same horrible disease that Maddie has been fighting hits way to close to home! I pray that his family gets the strength that they need to make it through this extremely difficult time.
Saturday, January 5, 2008 (10:00 AM) provided by Abbie and Maddie
Day +65
Today i had another grat day. Today we are celebrating my mommy birthday because my daddy wot be here for my mommy rell birthday and i love being home.
Maddie
Maddie's clinic appointment yesterday went well except for a few things. Platelets once again were 5,000. She at least went 4 days without receiving a transfusion which is a step in the right direction. So once again she had to get another transfusion to help bring them up. Maddie's weight went down again to an all time low of 19.6 (from 20.1) She is a bit dehydrated so they ordered fluids for me to place her on at home when needed. I am hoping some of the weight loss is from her being dehydrated so hopefully we will see it come up on Monday's appointment. All other counts are looking great!! The cold and cough still is sticking around but the doctor's are not worried. They are going to schedule her rountine scans in 2 weeks to determine the status of the cancer. She will get a MRI of the brain, CT scan of her chest, and a PET scan that lights up when cancer is detected. Unfortunately Maddie still requires to be sedated for the MRI but hopefully we can get her to do it on her own soon. These tests make for an extremely long and stressful day so hopefully the day will go quickly and the tests will tell the doctors what we already know which is the cancer is GONE!
For all of you that have wondered what you can do to help Maddie and other kids in her situation I have a suggestion. Yesterday we experienced first hand the effects of limited people giving blood. We were headed down to Children's when Brian called and said that there were no platelets available for Maddie to get if she needed them so they wanted us to wait and come down later in the day. Since we were almost there we kept the appointment and luckly they had one bag left for her to receive platelets. This is an extremely scary feeling for a parent that knows their child's counts are low and that they will have to wait to receive transfusions because of the limited supply. PLEASE take time to donate blood to help the other children and adults that are in need. There are situations when it is life or death and you taking the limited time from you day to give blood makes you a hero!!!
Please continue to pray for Maddie and the other kids on the floor. Also say a quick pray for Dayne which is a wonderful, adorable 2 year old that our family has grown to love. He is having complications and needs your prayers to get them corrected!
We hope you all have a great weekend!!!!!! Thanks for the continued support of Maddie and her fight against this horrible disease!!!!
Thursday, January 3, 2008 (8:30 AM) provided by Abbie
Day +63
I wanted to let everyone know how well her visit went yesterday. For the first time in quite a while Maddie's platelets were 12,000 after 2 days since a transfusion!!! YEAH!!! Her weight went up just a little from 20.0 to 20.1. (she did not lose weight which is great!) All of her other counts were good! With her liver counts fully recovered the doctor thinks that her platelets should start holding on for longer periods of time and her body will start making them. Her cold and cough is still hanging around but overall Maddie continues to do GREAT!
Thanks for all of your prayers that helped to get Maddie's platelets going in the right direction. We have another appointment tomorrow and hopefully the numbers will continue to rise.
Wednesday, January 2, 2008! (8:45 AM) provided by Abbie
Day +62
HAPPY NEW YEAR EVERYONE!!!! It is hard to believe that 2008 is already here. 2007 was such a difficult year for our family and we are looking forward to a healthy, happy, and rewarding 2008!!! We brought in the new year at home enjoying the time together. My parents usually have a New Years party but due to Maddie's restrictions we could not attend. So...of course Nana and Papa canceled the party and came to our house to celebrate. My sister and her family did as well and even with the fights between Emma and Gavin it was a great night!!! They had decided to have a slumber party but my dad and Ryan were smart and went home. We woke up and had a wonderful big breakfast to bring in the new year! It was really a great time and after this year it was exactly what we needed....a relaxing fun filled family evening!!!
Maddie and I spent New Years Eve at Children's. Of course she once again got platelets and also had to receive a dose of magnesium due to it being low. (With her being removed from fluids it takes a little bit to get the oral supplements that your body needs correct) All of her other counts were once again GREAT!!!! Her receiving platelets is extremely frustrating but believe me...I am so thankful that not holding onto her platelets is the only problem she is having! I just pray that they will start to last longer then 2 days. We are headed there again this morning and on Friday. The doctor has asked me to trust her and be brave because she is not planning on giving her any platelets today even if they are low. Knowing your child has limited platelets is extremely scary but hopefully this will be what it takes to get her body to start producing them. We will see....
Please say a quick prayer that Maddie's body starts producing platelets. That the cold and cough that Maddie, Emma, and Jackson have goes away quickly! Also that Maddie gets the healthy 2008 that she deserves!!!!!
Sunday, December 30, 2007 (1:45 PM) provided by Abbie and Maddie
Day +59
Today i had another great day. I am home and it is great to be home. My sissr and my bruther are happy i am home. Me and my mommy are happy to be home to.
Maddie
Well Maddie is right! Everyday I still wake up and am so thankful to be under the same roof with our entire family. Today all the Dulle kids are fighting a cold and I think I am on my way to joining them. Brian is still feeling ok and credits Airborne that he continues to take. We have had a good couple of days since I last posted. (sorry!!) We were at the hospital on Friday and once again Maddie got platelets.(they were 6000!) They continue to drop quickly but we are hoping that will change soon. All of her other counts looked great! Maddie has also stopped receiving fluids at night which helps her and I get a better nights sleep. The only challenge is making sure she is drinking enough and not getting dehydrated. The other concern we have is that Maddie continues to lose weight. Her belly has finally gone down in size and as she looses the water weight her overall weight is extremely scary! Maddie is really trying to eat but unfortunately her belly shrank during the time in the hospital and she can only eat little amounts at one time. So...it is quite the challenge making sure she is eating enough food that her body needs. Her weight is down to 20.2 kg (around 44 lbs) and she started the transplant at 22.2 kg (close to 50 lbs) It is amazing how that little bit of weight can make as much difference in how she looks. Other then this Maddie is feeling great and cannot wait to get her life back to normal. Yesterday I told her that once everyone goes back to work I will take her to the grocery store to let her pick our some food that looks good. You would not believe how excited she was to go to the grocery store!!! Her exact words were "YAY... I GET TO GO TO A STORE FINALLY!!" Pretty sad that going to the grocery is exciting. It reminds me how isolated we have kept her and how much that effects her. I will be so thankful when Maddie's immune system is strong enough to be able to go to public places and for me not be scared to death that she would catch something. We have our clinic appointment tomorrow and I will let you all know how it goes! Please keep Maddie and the other kids at Children's in your prayers!
Wednesday, December 26, 2007 (9:05 PM) provided by Abbie
Day +55
Hi everyone! We hope you all had a WONDERFUL Christmas. Well I obviously did not cross my fingers hard enough on Christmas Eve because we had to make a visit to Children's because of low platelets AGAIN! (they were at 6000!) I am so thankful because we were in and out in record time only 2 1/2 hours. While we were there an amazing family was giving out gifts to all of the kids on the floor. (this particular family had their daughter battle cancer when she was 2 years old. She is now 18 years old and they have been coming to Children's every Christmas Eve for 16 years giving out gifts to the kids on the Oncology/BMT floor!! Pretty amazing! I wish you could have seen some of the faces of the kids that received the generous gifts.) Maddie was lucky enough to get exactly what she had asked for on her Santa List. She received a Leap Frog Leapster and other great gifts. This just goes to show that things in life happen for a reason...this year "SANTA" did not bring as much as usual due to the circumstances and the Leap Frop was the one item that was not purchased from her list. It has been her favorite gift since she received it and she would have never gotton it if her platelets were not low.
We had another visit to Children's today and her platelets were at 7000. After her 6 hour clinic visit she received another transfusion of platelets. I am going to ask that you say a few extra prayers for Maddie to help Maddie's body to hold on and start producing more platelets. There is a medication that is available to help but there are side effects so I am praying that they become normal on their own. The wonderful news is that all of her other labs looked great. She currently has a cough and the start of a cold so we hope that does not land us in the hospital for a stay. We have another clinic appointment on Friday and 3 more scheduled for next week until the platelet counts get under control.
As for Christmas it was WONDERFUL!! After 8 weeks in the hospital being at home together with the kids was the best gift for Brian and I. With the hospital visit on Christmas Eve we were late to our Christmas Eve dinner at my sisters but we at least made it! The hard part was missing our Christmas Eve service at our church but it did allow us to have a nice quiet Christmas Eve at home which was nice. Christmas day was great watching the kids open their gifts and it being Jackson's first Christmas. (Jackson was not really into opening them, more just eating the paper) We had our annual Christmas breakfast at my Aunt Kim's and Uncle Ben's and we had Brian's side over for dinner. This Christmas was even better knowing how blessed we are to have Maddie at home and feeling good with the complication she had after the treatment. It also reminded me to be thankful for the wonderful family we have. For the love, support, and understanding everyone has given throughout this journey!
Once again I ask that you please say a quick prayer for Maddie. The sooner we get the platelets under control the sooner I get back to work and we get our life back to normal. (whatever the new normal is for our family!!!) The good thing is that our life will never be the same after this journey with Maddie. It has made all of us so much more thankful for being together each and every day. Also receiving the amazing generosity from all of you makes us want to make even more of a difference with Maddie's Hope! As I said before...things happen for a reason and I hope that I am understanding everything that God wanted me to learn from this experience. Hopefully you will too!
Monday, December 24, 2007 (12:20 PM) provided by Abbie
Day +53
Hello! I am so sorry for the delay in updating the website. Being home with 2 more kids and a house to take care of limits my time I can spend on the computer. Maddie has been doing great over the last couple of days. I can tell that she is tired by her eyes but you can not tell by how active she has been. Saturday night we did our traditional ride in the car looking at Christmas lights. Maddie not being able to go into public places limited some of our tradition but we didn't care. Jackson was finished looking at lights about 30 minutes into the adventure but overall did well. When we got home and were getting ready for bed Maddie fell and hit her head which gave us a pretty big scare. After lots of crying and a call to Children's Maddie was able to go to bed which she really needed. Thankfully she just got a pretty big bruise from it. On Sunday the kids were in their annual Christmas show at church. That as usual is a sight to see! Maddie was able to be isolated in a room above and was an angel in the play. I think the role really fit her well this year! We had labs taken here this morning and I am waiting to see if we will be taking a trip down to Children's today to get platelets. Maddie's central line gave blood which has not been working for the last several weeks which we were extremely thankful for. I have my fingers crossed that they are high enough to keep us home until our appointment on Wednesday.
It still amazes me that Christmas is tomorrow. The kids are so excited about Santa coming and Brian and I are just happy to have us all in the same house. We hope you all have a WONDERFUL CHRISTMAS with your family and friends. Enjoy the time together and be thankful because we know some amazing families that are not able to have their entire family together this Christmas. For the families on the floor...I pray that you have the best Christmas possible and know that missing out on this holiday just means that the future ones will be that much better!!!
Friday, December 21, 2007 (7:45 PM) provided by Abbie
Day +50
Hi everyone! We are officially at our 1/2 way mark and can not be happier! We spent half of the day at Children's for her clinic appointment and once again received platelets. The great news of the day was that her liver counts that were elevated have come back down! YEAH!!! After meeting with her doctor she said that there are limited cases that the VOD had returned after the initial diagnosis was cleared up. I had not heard that before.. Of course that came with "I don't want to scare you but she just wanted to make me aware." Easier said then done!!! This conversation came before her lab results were back and she was thrilled with the counts being back in the normal range.(you think the roller coaster ends when you get out of the hospital...WRONG!!!!) The other great news is we discussed getting transfered back to our wonderful, trusted, onocology doctor that Maddie's had for the last 3 1/2 years. It is not that I do not like her current BMT doctor it is just you build a relationship with the person that is doing everything to save your child's life and it was extremely difficult to have to be turned over to someone that you do not know. Especially during a treatment that is so risky due to the many side effects. Either way...her doctor followed her and visited through the entire transplant and we are thrilled to be returning to him in January.
It still amazes me daily how strong Maddie is and how blessed she has been through her entire battle with this disease. Maddie is currently upstairs spending time with her babysitter Morgan that she loves so much. Brian and I are going to meet a few friends for some adult time that is past overdue. I hope you all have a good night and I will update soon. By the way...Emma is sitting next to me and she wants to say HI!!!!
Wednesday, December 19, 2007 (11:10 PM) provided by Abbie
Day +48
Today has been an extremely long day and the kids are tucked in bed. (I hope Jackson stays there! ) We had a clinic visit that lasted forever which is not unusual. Our appointment was at 2:30 and we didn't get home until after 8pm. Maddie's central line was not working again which caused her to get an IV which did not make her happy. Unfortunately I am not sure how much longer her central line is going to work. That means another surgery to get a new central line or get a PIC which is a long term IV placed. I am praying that the central line quicks acting up!! Once we finally got her lab results back she needed to get platelets which we knew she would need. Her lab results gave me a scare but once I talked to the doctor I felt better. I noticed that a couple of her liver numbers were slightly elevated from her last lab results and asked to see the doctor. (these are the numbers that I prayed about for a week that determined if the VOD was correcting itself or not) As soon as the doctor walked into the room her first words were "don't worry". When I questioned what I was not to worry about she knew what I had called her there for. She said that with coming off of the steroids and knowing with Maddie's belly still enlarged and with the liver recovering the numbers will go up and down. Of course it would make me feel better if the numbers stayed in the normal ranges but what can you do!!! Needless to say we were happy to be home. I just kept reminding myself that at least we got to come home and all of that time spent in clinic didn't really bother me as much!
I just ask that you say a quick prayer for Maddie asking for everything to keep going in the right direction to get her healthy and strong soon. Maddie has been tired and has been struggling with walking up steps, etc. because of her being in bed for so long. Also pray for the other families on the floor. Please pray for Anthony...pray that the doctors find the medicine that helps to control the horrible disease that is taking over his body! During our visit today we got some great news that Maddie's friend Dayne which has been in the hospital since the end of October gets to get discharged on Friday. He will not be able to go home and be with his brother and sisters for several more months but at least he can be with his mom and dad at their temp. apt for the holidays! YAY for Dayne!!! As always thanks for your love and support for Maddie and the entire family!!!!!
Tuesday, December 18, 2007 (10:25 PM) provided by Abbie
Day +47
Hi everyone! It has been great being home! Unfortunately I have not got much accomplished...we have spent a lot of time with the kids which I feel is more important. Maddie had a good day. She has ate more being at home which is wonderful! Right now she is hooked up to her nightly fluids and is pretty tired. Having someone other then mom to play with all day keeps her busy. Day after day knowing where her counts are makes it difficult when you don't know where they stand. We have a clinic appointment tomorrow and I am pretty confident that she will have to receive platelets. It will be nice to say hello to everyone that is currently on the floor.
Please continue to pray for Maddie and the other kids on the floor. I wanted to say a quick thank you to everyone that has emailed me the amazing emails and for everyone that has offered help throughout this journey. Brian and I are so lucky to have such great support from our family, friends, and even strangers!
Monday. December 17, 2007 (7:30 PM) provided by Abbie
Day +46
WE ARE HOME!!!!! We got home around 2:45 PM and have been enjoyng spending time together. I will be sure to update tomorrow!
Thanks for everything!!!!
The Dulle's
Sunday, December 16, 2007 (8:30 PM) provided by Abbie and Maddie
Day +45
Today i had another great day. I went to the gift shop and ate at the cafateria with mommy and daddy. I played high school musical uno with Morgan and her mommy and my mommy out by the elevator. I am so excited about tomorrow because we get to go home.
Maddie
Well Maddie and I are sitting here watching "Survivor" enjoying our last night together in the hospital and my feelings are bitter sweet. As Maddie said we enjoyed a walk downstairs and some quality time with her good friend Morgan and her mom Michelle. Since we have been back from ICU and because Maddie's counts are so good she has been able to leave her room which really helps. You can only entertain a child in this small room for so long. She must still wear the dreaded mask that she dislikes so much but I think she is getting used to it. I am so excited because Maddie is doing so well and we get to go home and be with Brian, Emma, and Jackson. (words cannot express how excited I am about being able to sleep in my own bed and not be interepted throughout the night,use the restroom and shower in my own restroom, eat or drink with Maddie whenever I want to, hug and kiss on Emma and Jackson whenever I want..... I feel the only way you could truly understand these feelings is if you are a parent in the same situation.)
This brings me to the bitter sweet feelings.... you cannot understand the relationships you build with the other families on this floor. They are friendships that will last a lifetime. Every parent here has felt the pain of hearing that their child could lose their life because of a horrible disease. Every parent has seen their child in so much pain and there is nothing that they are able to do to help. Every parent prays to God each day to please heal their child and keep them here on earth. Every parent is scared to death when "Code Blue" is announced over the loud speaker and then feels horrible because they are so thankful that it was not for their child. Every parent would give anything to go back to the "normal" life before their child's illness was discovered. I have grown used to visiting them everyday and getting the good updates about how well their child has done. When one child is having problems we all are concerned and saying extra prayers for their healing. These relationships are one of the many positive things that come from this experience. I am not sure if I am feeling so sad because the holidays are here and I know many will not be able to be with their families this year or because over these last 3 weeks several kids have had some issues and one precious boy passed away. Either way....please know that I will miss our daily visits and the words of encouragement.
Please continue to pray for Maddie and the other kids on the floor. Pray that Maddie has spent her last night here and that she remains Cancer Free Forever! Pray that she continues to stay healthy until her immune system gets back to normal. Thank you to everyone for the amazing support you gave, the cards that brightened Maddie's day, and the many prayers that were said.
Saturday, December 15, 2007 (8:45 PM) provided by Abbie and Maddie
Day +44
Today I had another great day. My Nana and Papa come down and met me at the gift shop. I got a lot of stuff down there. Michelle my friends mom went with us too. I went to the playroom with my nana and papa and mommy. I had fun but then it was time for my nana and papa to go and I wanted to go with them. Me and my mommy went for a walk and got some snacks at the vending machine. We only have 2 more nights until Monday because on Monday we get to go home.
Maddie
Another good day. Maddie continues to do great and we are praying that nothing comes about that would stop us from going home. A little after midnight last night the nurse said her temperature was 37.8 and 38.0 is a fever. You better believe I was turning the heat down and getting the covers off of her. Thankfully no other scares for the rest of the night. Maddie is so excited about going home and she (as well as I) would be crushed if something would happen to stop us. Her platelets were 5000 this morning! (normal range is 135000-466000) It still amazes me how low they let them go on the BMT side. Anyway, they once again loaded her up and I pray each time that her body starts to hold onto them for longer periods of time. On the positive side...right now this is the only real problem they are seeing with Maddie and losing platelets are normal and can be fixed so we are really thankful.
Days like this make me sad not being able to be at home watching the beautiful snow with the kids. During dinner I was talking with some of the amazing families that I have met on the floor. I cannot believe that Maddie and I have been in the hospital for 8 weeks/53 days. I see Emma and Jackson and I can tell how much time I have missed with not being able to be with them each day. Yet when it comes to Maddie it amazes me that we have already spent 53 days here. I guess that is God's way to help you get through this difficult time. It is like a bad dream and after time hopefully the really painful and scary parts will be remembered less and less. For me I want to remember the difficult fight Maddie had to endure for her to be cancer free. All of these kids are truly amazing and should never have to go through what they do.
Please pray for Maddie and all of the kids on the floor. Also pray for their families during the holidays. Having a sick child not only effects the child that is ill but the entire family.
Friday, December 14, 2007 (10:00 PM) provided by Abbie and Maddie
Day +43
Today i had another great day. My sister and brother come down and played with me in the playroom. My daddy brought them down. My sister cried down to the car but i understand why because she doesn't want to leave us but she was ok when she got down to the car. i didn't want them to leave either but i know they have to. i'm so excited to go home on monday. I wish we could go home today but i have to wait until monday i understand why they want me to wait to go home on monday they want to make sure that i'm ok so i don't go home and come back the next day. My new kitty kalyee is a little wild but i do not care because i will still always love her. I painted my nails and i took a bath and it felt really good. I painted my mommy's nails too. I did some crafts. Tomorrow we are going to have a lazy day just me and my mommy together becasue I won't get to have time with just me and my mommy when we go home because i know my sister and brother will want to spend time with her to. I know we will have more family time with me and my dad my mom and my sister and my brother to. but i can't wait for it becuase we have not had family time in a while because me and mommy have been in the hospital so long.
Maddie
Things continue to remain the same for Maddie and being on this floor that is a great thing!!! Her central line is acting up and not wanting to give blood but they were able to put medication in there that got it to work this morning. I hope that it will solve whatever is happening and we have no other problems. Counts remain solid which is wonderful. Liver counts great! Platelets still remain on the lower end but like I said before those are what will be bringing us back for clinic visits several times a week. Hopefully by the first of the year Maddie will be able to go more then 2-3 days without having to get a tranfusion.
My nephew Gavin had his birthday party tonight and it was extremely difficult knowing that we all were missing it but having Maddie feeling so good really helps. The next couple of days I plan to really enjoy my time with just her and I. We cannot wait to get home but as she mentioned above she knows that she has to share my time with her brother and sister and for the last 8 weeks I have been 100% her's!! She is an amazing child and I know she will do just fine.
Thank you all so very much for your continued prayers and support you have given our family over the last 8 weeks. We know as a result of the many prayers said she has made it through this difficult treatment but unfortunatley is does not stop here. She has to get through the next several months and not get sick or have complications with her immune system being so fragil. Then we start the stressful scans that take place at the least every 3 months to determine if Maddie stays cancer free! These scans will go on for many years because doctors do not know enough about her type of cancer to be able to call her CURED after a certain time frame. The first time we were told that after 2 years from treatment Maddie's chances of being "CURED" were high. Well we all know that was not true. We are confident that Maddie has endured her last chemotherapy treatment and she will be cancer free forever but the horrible feelings you get before each scan are still there. As a parent having your child's future riding on what the doctors see on a test is sometimes more then you can handle. This is when we need you to continue to pray for Maddie. Please pray that Maddie continues to be cancer free and is able to make a difference as a result of her battle against this horrible disease.
Thursday, December 13, 2007 (10:00 PM) provided by Abbie and Maddie
Day +42
Today i had another great day. I had school today. My sissy and my daddy came to see me. my sissy brought me mcdonalds today i did't eat most of it but i did eat alot tonight. i don;t know if my tummy liked it. I went to the play room to day. I wus supposed to paint my nails and my mommy's nails but i ran out of time. But tomorrow I am going to try to do it.
maddie
Well as you can see things could not be better for Maddie. Maddie and I are sitting here listening to music while she paints a snowman and I attempt to do some Christmas shopping on line. (not my favorite way to shop but what can I do!) Her counts remain solid! She has been unhooked for 10 hours today and we are waiting for the nurse right now to get her on fluids. She has been active all day playing and doing tons of crafts. I cannot express how wonderful it is to see Maddie acting like the Maddie we know and love! We got the news today that if everything goes right we will be heading home on Monday! YAY!!!!!! She will be completely off of the steroids and her pain medication tomorrow. From then until Monday it will be getting her to take all of the medications that she needs by mouth and making sure electrolytes stay solid. Like I had mentioned before she will be going home on fluids for 12 hours a day for a little while but hopefully shouldn't be on them for long.
Today was a difficult day for the families on the BMT floor. A little 3 year old boy by the name of Rico Carter lost his fight against cancer this morning. It is so difficult because you get close to the other families on the floor and your heart breaks as if it was your own child. I know how hard that little boy fought and the only comfort is knowing that he is not longer in pain. Please pray for his family to have the strengh to make it through this difficult time.
If you learn anything from Maddie's journey I pray it is to not take any day for granted! Love your children and tell them you love them EVERYDAY! Be thankful for them because everyday is a gift. For the people that work 80 hours a week or complain about your children daily.... I hope that you will never have to be fighting for your child's life to realize how much time you have wasted. Please remember...all of the quality time that you fail to spend with you children each day you will never be able to get it back!!!
Wednesday, December 12, 2007 (9:30 PM) provided by Abbie and Maddie
Day +41
Today i had a another great day today. Another great day of school. I finally did my wish list for santa i hope he gets me what i want for christmas. I had lots of visitors today. i went to the play room today. My dad and my nana stayed with me for a little bit why my mommy went home for a little bit but i had fun.
Maddie
As you can see Maddie had another good day. I am surprised she did so good because she did not want to go to sleep until after 1am last night and was up early. I got to go home and spend much needed quality time with Emma and Jackson. Hopefully next week I can get some Christmas shopping in. Today I thought....Christmas shopping or time with my babies???? I know I made the right decision.... Her counts looked good once again. Electrolytes are getting more solid each day. She was off the fluids for over 7 hours again today and her counts stayed good. I am hoping that tomorrow we can be off for close to 12 hours which is what we will be doing when we go home. When we finally get home Maddie will have to stay on fluids for 12 hours each day for a little while until her electrolytes get back to normal. Small price to pay to be able to be home for the holidays! Her eating continues to get better each day. Her Uncle Scott brought her favorite pizza "Domino's" for her and the other families on the floor. Thanks for that Scott!!! The word is that Maddie should be able to go home sometime early next week. YEAH!!!!!
Please send positive thoughts Maddie's way and pray that nothing comes up that will stop us from going home early next week. I will try and get some new pictures posted soon so you can see how well Maddie is looking!
Tuesday, December 11, 2007 (10:40PM) provided by Abbie and Maddie
Day +40
Hi everyone! Not sure what happened with last night's update but I just realized that it did not show up. Sorry about that!! Maddie has decided to help with the nighly updates and let you all know how she is doing......
I had another great day to day. i had a really glittery day but i thought it was fun but it did get all over. i had another great day of school. also i went to the play room for private time and made lots of crafts. i finished my papa's card for his surprise birthday party. i fill good to day i really really want to go home.
maddie
I could not have said it better then that! Maddie is really feeling great and we both are so looking forward to getting home soon. Eight weeks in this hospital is really starting to get to us! Having her feeling and looking so wonderful does make it all worth the stay! Her counts continue to stay strong. Her liver counts are all in normal range which is the answer to alot of prayers. Electrolytes are still giving the doctors some problems but time has proved that they continue to get corrected. She was able to be unhooked for 6 hours today which is one more step to getting home. Seeing Maddie not attached to a pole is a wonderful sight! She continues to receive platelets quite often but I am told that is what happens as a result of the transplant. The other exciting news is that Maddie has started to eat which is wonderful! This means that we do should not have to have a feeling tube placed which makes Maddie so happy. Her belly is still a lot bigger then I would like to see it but they continue to tell me that it will take time to get back to its normal size. Plus with her stomach getting real food for the first time in 5 weeks and her digestive system working again has effected her belly as well. I am hoping that it gets back to normal soon. Seeing her walk reminds me of how I walked being 9 months pregnant with Jackson earlier this year. Not a pretty sight!!!
Maddie overall continues to do better then any doctor's expected her to do at this point. Please keep her in your prayers. Issues seem to come up quickly with the transplant kids and I pray that this will be Maddie's final stay in the hospital. Pray that she continues to get better and better each day and that we are able to be home to enjoy the holidays this year and the many holidays in the future. Also I wanted to thank everyone for the extra prayers for my Grandpa. His surgery went well and is recovering before physical therapy starts.
Sunday, December 9, 2007 (10:30 PM) provided by Abbie
Day +38
Hi everyone! Today has been another good day for Maddie. She was up again last night because of a midnight dose of Lasix but was able to sleep in til noon. She has felt good except for a tummy ache this evening. Her belly feels a little hard tonight but
knowing all of the stuff she ate today I am sure that is the reason. She is really starting to eat which is wonderful! All of her counts continue to look good except for her electrolytes. Everytime they draw labs they seem to switch the amount in her fluids so who knows when they are going to get it leveled out. I will be talking to them tomorrow about how they are planning to get her electrolytes figured out so we can get home soon. The 2 things that need to happen before we can go home is for Maddie to start eating enough food that her body requires and getting her electrolytes figured out. Maddie is working hard with eating and now the doctors need to figure out the electrolytes.
Please say a quick prayer for several kids that are having some problems here on the floor. A wonderful family that we have met have testing scheduled tomorrow for their little boy and we pray that they get good results! (which they will!) As always please keep Maddie in your prayers. Everything is going better then we could expect and we pray that it continues!
Saturday, December 8, 2007 (10:15 PM) provided by Abbie
Day +37
Today has been a great day for Maddie and I. We both got a good nights sleep last night. I think we are still making up for the stay in the PICU. Maddie actually slept until around noon today which was good because she went to bed so late last night. The great day started out with great counts again! Her liver counts are almost back to being normal!!!!
Bili U .8 which is in the normal range
Bili Conjugated is down to 0.4 (normal is 0.0-0.1)*this is the one that was elevated to 3.4
AST is slightly elevated at 72 (normal is 15-60)
ALT if finally normal at 28 (normal is 10-35)
Her blood counts are slightly lowered but with everything we have been throwing at her they just need time to come back up. Her electrolytes appear to be getting a little better which is great. Her potassium is staying pretty solid and she is now taking sodium supplements which is pretty tough on her stomach. The best news of all is that Maddie is asking for food to eat! YAY!!!!
This morning my dad offered to get anything she wanted all she had to do is call. Well late afternoon she called him to bring her her favorite meal from Applebee's which is grilled cheese and fries. She ate several bites which is one more step to her getting out of here!
Today Maddie and I really had a great day being lazy and spending time together. It is so wonderful having her back to her old self! She went to the playroom and decorated some ornaments while we were enjoying a visit with a good friend Jan from work. We made several trips to the vending machine trying to find things that looked good to her to eat. We played the Wii and Webkinz a lot and were able to at least wave to her friend Morgan that is inpatient on the other side of the floor. Morgan is in for an infection so we have to keep them apart for Maddie's safety. The day has ended with a visit from Nana, Papa, Emma, and Jackson. Right now we are laying in bed watching Sky High?? while Maddie is eating pretzels.
It is hard to believe that one week ago today we went to the PICU in hopes that the steroids would help fight off the deadly disease she had gotton. If you all could see how well she is doing now!!! Like I said before....Madelyn's strength is so amazing to me and our entire family! Today I have this overwhelming feeling that Maddie really has fought her last battle and she will be cancer free forever!!!!
Quick update...thanks for all of the extra prayers for my Grandpa but due to low blood counts they decided to wait have his surgery until tomorrow. Please pray for him and all of the kids here at Children's.
by the way....I wanted to ask for you all to forgive the misspellings and grammer on some of these updates! There is not spell check on this program and Maddie usually limits me on how long I am allowed to spend on the computer.
Friday, December 7, 2007 (11:45 PM) provided by Abbie
Day +36
Hi everyone! I just updated the site and went to take Maddie to the restroom and somehow lost everthing so this will be short and sweet! Maddie had another good day. I think a few more days like this and she should be back to her old self! Maddie had to get a dose of Lasix around 11:15pm last night and that kept her up until around 3am. From 3am to 8am Maddie and I got the best sleep we have had for the last 2 weeks. We are now refreshed and ready to do what it takes to get Maddie out of here and home for the holidays. Her liver counts have continued to get better. They repeated the ultrasound and found that everything is still improving. I have asked them to not repeat another for a few days due to the gel irritating Maddie's skin so much. She is still having electrolyte issues but they are getting better each day. Still not really having an appetite but she is trying more and more so I think it is starting to get better. The doctor did say how surprised everyone is by how well Maddie is doing so soon after this disease hit her. For everyone that is lucky enough to know Madelyn we are not surprised at all. We have been told that Maddie has had a life-threatening disease 3 times in her short life and she has overcome each one! Now..I think that 3 times is enough for any child and I pray that this is the last battle Maddie will have to fight. She deserves to have a normal life and do what kids do and not have me freak out over every little bump and bruise. I hope I can do that for her sake!
Thanks again for the thoughts and prayers. Please continue to pray for Maddie and the other kids that are stuck in the hospital during this holiday season. Also please say a quick prayer for my Grandpa that will be having surgery early tomorrow morning. He broke his hip this week and being 90 years old I know the recovery will be difficult. He has always been feisty and I am sure that will help him get through it.
Thursday, December 6, 2007 ( 10:25 PM) provided by Abbie
Day +35
Yeah...we are back on our regular floor and are looking forward to a much needed good nights sleep. Maddie has actually already started without me but I plan on joining her really soon. Last night we were surprised with them giving her a dose of Lasix around 1AM due to her limited output and it caused frequent trips to the restroom for 3 hours. Maddie had a good day and I can see that she is getting better little by little each day. She is still tired and not wanting to eat but I am confident after a couple of days here that will turn around. Brian brought Emma and Jackson for a visit and Maddie actually walked out front in the lobby and spent time with them. It was great seeing her up and about. It is so nice having everyone staff and families so happy to see us back on the floor. Believe me since we have to be here I am so thankful that we are on the A5 floor. We spent our normal Thursday night watching Survivor and then I watched my favorite Gray's Anatomy. (Maddie does not like seeing the blood and sugeries on that show and it makes me laugh knowing everything she has had to go through in her lifetime!)
Overall update on Maddie is great! Her electrolytes have been staying solid which is wonderful! (I am currently waiting on her 10:00 PM labs) Her liver counts continue to come down which of-course is the answer to our prayers! She no longer needs to use her blow by oxygen because her belly has come down a little in size and is not pushing on her lungs so much. As I mentioned before she has had no appetite but I am hoping that will change soon. Her belly is still causing her some pain but because it was not helping with the pain we removed the morphine pump today. She is still on methadone which I hope is giving her the help she needs. As a parent you do not want to see your child in any pain but sometimes that is what it takes to get them better and it is extremely difficult to watch!
Thanks for all of you taking the time to check on how Maddie is doing. I tell her everyday how special she is knowing that so many people are praying and pulling for her to get well soon. She does not get how amazing it is now but she will when she gets older. She will have every card, email, and letter that she has received to share with her family and show them that all of the prayers from all of you is why she is still here. Please pray for Maddie to continue to get better and better everyday. Also pray for the families that are currently facing issues with their child't treatment. The bond you make with these families cannot be understood unless you were in the same situation. The rollercoaster of emotions that you have to go through is sometimes more then you think you can take! Praying day after day that your child gets the treatment they need to stay here with us. As in Maddie's case sometimes the treatment is what causes the problem but you have to stay positive and know that it was the right decision and that your child will get through it. There are several kids that need extra prayers so please take a minute and think of them! Thanks for everything!!!!!!
Love,
Abbie
Wednesday, December 5, 2007 (11:25 PM) provided by Abbie
Day +34
Another day on the ICU floor. In rounds I was told that they did decrease the medication that is keeping us on this floor but they wanted to give her 2 more doses just to make sure that her numbers stayed solid. They also took away her Lasix doses and her electrolytes appear to be getting back to where they need to be. Her liver counts continue to come down which is great! Her belly is starting to come down in size but she continues to have pain. I am told by the pain team that they really do not have medication that will help with her pain. Her belly needs to get back to normal so to speak and the cramping/pain goes along with it. She has had NO appetite which I am hoping turns around soon.
My mom staying with Maddie today allowed me to go home and see Emma and Jackson for a much needed visit. It is hard to believe that Jackson is 9 months today. Being in the hospital for the last 7 weeks I feel like I have missed out on so much and it breaks my heart! This has really been difficult on Emma the Bug but like I told her today I am confident that Maddie will get better and we will all be home together soon! With us getting the first snow of the year today she was wanting me to go outside and play with her in it. (for all that do not know me.. I am always cold and do not like cold weather!) Brian and Jackson were smart and stayed in where it was warm. I gave in and I am so thankful I did. Seeing the smile on her face was priceless and it reminded me how thankful I am for having such amazing children!
As always thank you all so much for your love and support! I love reading the emails from people that I have never met saying that they are praying for Maddie. Please keep them coming. Maddie still has a lot of healing to do and cannot get better without all of your help.
Tuesday, December 4, 2007 (4:00 PM) provided by Abbie
Day +33
I am so happy to be doing this update today! We just found out that the results from her ultrasound today were exactly what we wanted to hear! Maddie's reversal flow in the main portal vein in the liver has returned to normal.YEAH!!!! Her liver is still enlarged as well as her belly but my understanding is this will correct itself overtime. Maddie's counts were also encouraging today as well. Billi U down to 0.7 from 0.9 and bili conjugated down to 1.7 from 2.4. Her electrolytes are still causing some problems but hopefully they can start limiting the doses of Lasix she is receiving so they can level out. This team is working hard to get Maddie's electrolytes fixed and for that I am so thankful! Her weight is also down to 22.3 which is where she was when she started the stem cell transplant. We still have things to get corrected but everything in my eyes could not be going any better.
Hopefully by tomorrow or Thursday we should be able to return to the BMT floor. The only reason we are still in ICU is because some of the medications that she is receiving are only allowed to be given here. The challenges that lie ahead is getting Maddie's belly and liver back to the normal size and getting Maddie to eat. This has shown to be quite the struggle but Maddie is stong and I know will start eating soon. The doctor made it clear that getting back to normal from reversed VOD is nothing that happens quickly. He again stressed how serious this particular disease can be and it is important to give Maddie the time she needs to heal at her own pase. This pretty much lets me know that it could be some time before we are able to return home. As I said before... spending more time here is nothing compared to having Maddie healthy! I hope not but if we have to be here at Christmas we know that we will make the best of it since we've been here before. (Christmas Eve of 2003 we were admitted to the hospital in the middle of the night with a fever and stayed for over a week)
I cannot say thank you enough for all of your thoughts and prayers. Several families that we know have lost their child to cancer lately and I feel so blessed to have Maddie still here with us. I believe that she was given to us for a reason and will do amazing things in the future. She compares herself to me all of the time because of my fight with cancer but I can say there is no comparison. She has faced so many more obstacles then I did and she continues to have the best attitude and her spirit stays strong. For this and many more reasons Maddie continues to amaze me on a daily basis and I am so thankful that I was lucky enough to be her mommy!
Monday, December 3, 2007 (2:30 PM) provided by Abbie
Day +32
Hi everyone! It has been another fun filled day here in the ICU. Maddie continues to do extremely well with the large dose of steroids she has been getting. She got her 4th dose this morning at 5:30 AM so she only has 2 more to go. Maddie continues to struggle with the dumping of her electrolytes (I was spelling it incorrectly) but everything else is going good. Her liver counts are coming down slowly BUT they are coming down so that is all that counts. Bili conjugated went from 2.7 to 2.4 and Bili U from 1.0 to 0.9 and her liver continues to make albumin. Her weight also has gone down from 23.0 to 22.5. Her belly is still pretty extended and painful but I am hoping to see some changes there soon. Overall the doctors continue to be thrilled with how well she is doing. We are starting to push her on eating small amounts of food every couple of hours to get her belly working.(she has not ate for weeks plus she has been off of nutrition supplements for 1 week now) They are also trying to get her to take some of her electrolytes by mouth which so far has been a struggle. I felt horrible last night because we had her take an extremely large dose and she threw it all up. I knew she would but I wanted to see what she could handle. Needless to say I had them remove one medication and cut the other one in half. So far so good with the dose this morning.
Maddie is doing great and we are so thankful. The more I am in here and hear the staff talk about how fatal the VOD disease is I realize how fortunate we continue to be. Please keep Maddie in your prayers. The real test will be when she is finished with her steriod doses and we see that her liver continues to recover. They are going to repeat her ultrasound tomorrow so pray for the doctors to see a significant change for the better!
Sunday, December 2, 2007 (4:30 PM) provided by Abbie
Day +31
WOW...I thought that we didn't get sleep when we are on the BMT floor well obviously we have not been on the ICU floor lately. Besides the fact that we are extremely tired Maddie has had a wonderful day. Her electrolights continue to give the doctors something to work on put fortunately she has had no real side effects from the high dose of steroids. She received her first dose last night around 5:30 PM and her second this morning at 5:30 AM. Her glucose went up a little but nothing to be alarmed about and her blood pressures continue to stay solid. Plus her kidney functions are staying solid which is what we need to happen.
More great news.... her weight went down to 23.3 (was 23.5) last night and it stayed there this morning as well. The most wonderful news is her liver counts have come down some...YEAH!!!!!! Bili conjugated went from 3.4 to 2.7 and her Bili U went 1.4 to 1.0 (which is normal) The liver continues to make albumin on it own which is great! The doctor was thrilled with how well things are going and so are we! We pray that the liver functions continue to decrease so we can get her Lasix doses slowed down and her electrolights corrected.
I have to say I was reluctnant to come to the ICU floor but am very thankful we did. With the issues that can happen I am thankful that we have 1 nurse to concentrate on her needs. I found out that she will receive her 6 high dose steroids then 2 smaller ones so we most likely will be here until Wednesday then hopefully return to the BMT floor.
THANK YOU so much for all of your prayers. I believe they were answerd but her liver counts need to continue to drop so please keep them coming! Pray for her body to start and correct the damage this disease caused and get Maddie healthy again.
Saturday, December 1, 2007 (10:30AM) provided by Abbie
Day +30
Well the great news is that we had little sleep last night which means that Maddie was up using the restroom all night which is GREAT! They were extremely happy with her fluid output and her electrolights stayed pretty solid which is another plus for us. The kidney doctor came to see her and are not yet concerned with her kidneys. So far they are doing what they are supposed to be doing with the high dose of medicine they are seeing which again is great! The most exciting news is her weight is back down to 23.5 (lost like 2 pounds) and her belly went down a little as well. She still has a ton of belly pain but hopefully we will see a change in that soon.
This morning we will be moving up to the ICU floor. The doctor's here contacted several other hospitals that see VOD more and found out what steps they take to help turn this disease around.(still there is no set cure for this particular disease) One has tried limited amounts of high dose of steroids and have had successful results. Since her liver functions did increase overnight (from 1.4 to 3.4) they feel it is worth a try. They feel better with us being on the ICU floor to help keep a better eye on Maddie. She will be receiving 6 total doses every 12 hours and we should be back down to the BMT floor in 3-4 days. I need to pack up the room so I will be sure to give you a update later. Please pray that this treatment of steroids helps and Maddie gets better soon!
Friday, November 30, 2007 (10:50 PM) provided by Abbie
Day +29
Oh what I would give to be at work stressed out over really stupid stuff and not here seeing Maddie going through all of this. Today was another tough day but is ending on a better note and for that I am so thankful. She had a much better night of sleep last night but unfortunately it came at a cost. Her weight went back up to 24.5 which means she put back on around 2 lbs overnight. Her liver numbers came back a little higher but nothing to be alarmed about which is great. The extremely serious problem we are having is trying to get rid of the excess fluid in her belly and still keep her electrolights solid. They are working hard to get the balance right but so far have not been successful. They gave her several doses of other medications to try and get rid of the fluid and was extremely unsuccessful this afternoon. We got a visit from the kidney doctor because her kidneys are the next organ to start having issues if this is not corrected quickly. On top of that there is talk that we maybe heading to the ICU floor soon to help monitor her more closely due to these issues. She was given another dose of Lasix (double the volume that she has been receiving) and thankfully has had over 900 ml's of urine output in 4 hours which is WONDERFUL! (to give you an idea she only had 280ml's all day!!) We are now waiting for her electrolight labs to come back to see how much her body wasted. If this does not work they will start to try things that have serious side effects on other organs in the body. I know I ask all the time but we really need extra prayers for Maddie to beat this disease. We are getting to an extremely serious point and things need to get corrected quickly. Please share Maddie's story with as many people as you can. Any extra prayers can only help.....
On a sad note I wanted to also ask for prayers for my sister's friend that had her nephew pass away yesterday from cancer. His name is Eben Glynn-Jones and their family needs a lot of prayers to help them through this difficult time.
Hearing about this poor innocent boy that had his life taken from him and seeing Maddie and the other kids fight this ugly disease makes me so angry and I want to scream....WHY?? Why do these children have to go through this?
Did you all know that Cancer... is the number 1 disease killer of children?
Did you know that over 12,500 children in the U.S. are diagnosed with this ugly disease each year and although cure rates are steadily increasing still about 4000 will die from it each year. That is 11 children every single day,every single year!
The scary part is that our children are being treated with the same drugs that 60 year old men and women receive and each day pediatric cancer research goes under funded. Doesn't really make sense to me. This is one of the reasons that Maddie's Hope was created. If you would like to learn more about what you can do please visit www.curesearch.org.
Thank you all for your continued support. Thank you to our family that have turned their lives upside down to help with Emma and Jackson. And finally thank you to all of the BMT families that have helped brighten my day when Maddie was not doing so great!
Thanks for tonight Tonya!
It is 11:30PM now and I am so happy to say that her electrolights stayed solid after her large output of fluids. THANK THE LORD!!!
I pray that I will continue to have wonderful news about Maddie to update you on tomorrow.
Thursday, November 29, 2007 (10:45 PM) provided by Abbie
Day +28
It has been another roller coaster day here at the hospital. Maddie had a extremely restless night again but the frequent restroom visits paid off. She lost another .5kg (1 pound) which is great! She had no fever last night which is also good. Her liver levels did increase which was a little discouraging but I was quickly reminded that they are not to a level that is really alarming just yet. To my pleasant surprise the doctor had already planned on repeating another ultrasound this morning. They found that the spleen is also enlarged and will be repeating it again tomorrow to look closer at that and the liver again. Maddie's oxygen levels continue to decrease when she is sitting in certain positions due to the pressure of the enlarged organs on her lungs. They took a quick x-ray and determined there is not fluid in the lungs which is great! The only other issue we are having is keeping Maddie's electrolights where they need to be as they are pushing her body to get rid of all extra fluid. Her body has always had issues wasting them so the doctors are monitoring them very closely to get them where they need to be. After a good conversation with her doctor I felt better about the situation. One fact I learned is that Cincinnati Children's has only seen one other BMT patient with this disease over the last 4 years. Kind of scary......
The factors that are on our side besides the fact that Maddie has proven over and over that she is a fighter is.... Maddie still looks great....she is still active (went to the playroom today for private time), she is drinking and starting to eat small amounts of food. Her liver counts have risen but not as quickly as a severe cases of VOD. If this is VOD Maddie got it later then the average child which is positive because the toxic chemotherapy that has created this problem is out of her system.
We are not out of the woods but we are confident that Maddie has the strentgh to beat this disease. We really need your continued prayers to help her through this. They make it very clear that it does take time to allow her body to recover from this. Also pray for us to have the strength to make it through the next couple of weeks. It is a possibility that it may get worse before she gets better and we need the help to stay strong for her and Emma and Jackson. Finally...I know I am asking for a lot but also please keep all of the families on this floor in your prayers as well.
Wednesday, November 28,2007 (10:30 PM) provided by Abbie
Day +27
Hi everyone! I was hoping that I would have a lot of information to update you on Maddie but unfortunately I do not. This morning before rounds the liver team came to visit and expressed that they are not fully convinced that Maddie has the VOD disease. They feel because of her liver counts being so solid and her not showing other signs of severe liver failure they were thinking that maybe she has an aggressive stomach virus that is causing the damage to the liver. The only way to determine that is to stick a needle in her belly and test the fluid. The BMT doctors are choosing not to do that at this point because of the risks which takes us back to square 1! On top of that her doctor let us know that she discussed Maddie's situation with other BMT doctors and everyone is still surprised that she can get VOD this far out from treatment but of course cannot give us any other ideas as to what it could be. I have said til I am blue in the face that Maddie has never done anything buy the book but I am not sure if anyone is listening! They are currently treating the issues Maddie is having as VOD (weight gain due to excess fluid) because she needs to get rid of this extra fluid in her body before other issues arise. (also I forgot to let you know that when kids get severe VOD there is no cure or treatment to stop it and it is fatal) Yet another reason why it is so frustrating as a parent to first hear that your child may have a disease that is extremely fatal if it is not caught early...then they are not sure if she has it or not...it has been such a stressful 2 days and we pray that we get some great news tomorrow. They keep telling us that it really is a wait and see situation but for all of you that know me I do not do that well at waiting! We are waiting to see if her body allows the liver to correct itself or decides to get worse which at some point it would not be able to be corrected. YEAH.......the waiting is not going to work for me when it is Maddie's life on the line!!!!!! I will be asking them tomorrow to redo the tests that they are already done to see how the liver is at this point.
Most importantly.....Maddie is doing good! She continues to have belly pain but they are helping to control it with pain medication. She lost .8 kg which is close to 2 pounds f