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Week 8 Sunday, June 27th--ALLIE'S BACK!!!!
Thank you, our loving pee praying friends! The pee starting flowing today--woo hoo! She was negative (that's a good thing) 376 cc's for today. That means she pee'ed out much more than she took in. Hallelujah! Pee is good! So, today has been fantastic. We are so happy to see the real Allie back. Last night, she and Andrew were on the bed together. I decided to take a tyelonol PM before going to bed. I look at the two of them, and she was pulling his lip practically off. Naturally, I giggled a bit. Apparently, not the right thing to do. She began to wail. We made her pretty angry. So, we spent the next thirty minutes trying to come her down. Andrew finally pulled the laptop over to the bed and set up Baby Einstein, Baby Van Gogh (that one is so cute! The puppet is a goat named Vincent Van Goat-he even has a bandaged ear!). She was content and finally fell to sleep. I crashed on the couch. At 4am, she woke up vomiting. She is trying so hard to get rid of all this mucus. Andrew and I were both up with her, cleaning her up and changing her diaper. She also had a fever, so her nurse, Marsha, gave her some toradol. Andrew confessed that he wasn't sleeping well in the bed with Allie. He is even that much more appreciative of what I do every night after trying to sleep with her once. I offered to switch places with him and went right back to sleep with Allison. At 6am, Allie woke up again ready to play. Toradol had kicked in. I got up with her, dragging a little with remnants of PM still in me. Andrew slept through all of it! At 7:15 or so, he leans forward a bit and asks, "Do you want me to come and switch places with you so you can sleep a bit more?" Yes, that would be nice. His reply? "No, I want to sleep some more." Turns over, and goes back to bed!! Huh?!? I guess he just wanted to check if I wanted to, didn't have any intention of DOING it! He doesn't even recall having said it. Right before Dr. Goldman came in, respiratory came in and removed her nasal oxygen tubes. The lady pulled the tape off Allie's face without using adhesive remover (all our nurses know--ALWAYS use adhesive remover with Allie!). Man, was she ever ticked off. She screamed bloody murder. Perfect time for Goldman to walk in! He was pleased that she could scream like that, and still keep her oxygen level up. She is still using a blow by tube for oxygen, but nothing is stuck to her chubby face. Good news on Allie's counts--her ANC is now 507! She is finally able to kick this infection because she has white blood cells, and segs and bands. She had 45% total neutrophils. Knowing that she had 0 three days ago, this is wonderful. Dr. Goldman did drop a bit of a bomb on us. Given that he counts are beginning to come back, he wants to go ahead and do her bone marrow biopsy this Tues. or Wed. to check and see what we have going on. Her platelet count is still low, and she needed a transfusion. One thing about healthy bone marrow is that it is able to create new platelets on its own. Her fevers have burned most of her platelets off. Dr. Goldman says that normally, platelets begin regenerating on their own about five to six days after an ANC appears. So, in theory, she would start having a high platelet count in about four days if she has healthy marrow and not leukemia. That was actually an indication last time that she didn't have healthy marrow. Her platelet count dropped down even though her white blood cells were at 10,000, indicating leukemia. We thought we had over a week to pray for those cells. We now have a few days. I'm terrified to hear the results. Dr. Goldman said, "If I were a betting man, I would think she's in remission." Just hearing the R-word scares me. I don't want to hear it until it is for sure, positive. We set ourselves up thinking that last time and she still had 50% leukemia. We don't know anything until results come back from flowcytometry. This give us an exact percentage of leukemia in Allie's body. Less than 5% is remission, but we will go to transplant with anything less than 10%. Everyone have a cell to pray for? PRAY HARD!! A woman from my birthclub, Tonia Kovach, sent me the most beautiful gift she could have given me. She and her husband went on the site and pulled pictures of the baby from her birth to now. They then created a power point presentation of her pictures, in order, with the Shania Twain "Forever and For Always" playing in the background. Absolutely gorgeous. Andrew, my mom, my brother Jeremy, and I sat here about an hour ago watching it. We all had tears in our eyes when it ended. I then carried the laptop out to the hall, knocked on Jordan's door, and showed it to our nurses, Matt, and Amy. Thank you so much, Tonia! We are going to burn several copies for our parents too. Another woman, Sara (sorry, Sara, I don't know your last name), just e-mailed me a picture she drew of Allie using a computer program. It looks so much like her! The kindness of strangers is truly amazing. Thank you all for your prayers. She has not spiked a fever since that time at 4am. Her heart rate is good and so is her oxygen levels. Please pray that she continues to fight off the infection, doesn't need oxygen tubes again, and gets her vomiting under control. She is vomiting quite a bit still. The doctor assured us that he would rather her vomit than keep it in. She is expelling the bad stuff from her body. I just hate to see it because it really bothers her, of course. Sam has a little cold right now. He is at home with tons of energy. Please pray that he doesn't spike a fever and have to be hospitalized. Jordan had a rough day with pain in his mouth. Pray that he is able to get that under control, continue to eat, and get home this week for the fourth of July! I'm going to go and snuggle my girl now. As a mother, you feel connected to your child even during pregnancy. I've adored her little face since the day she was born. Andrew and I were both discussing this last night--we love her even more now. This experience has made us understand what's important in our lives. Even our love is stronger. Makes you appreciate what we have--each other. Give your loved ones a hug too. Snuggle them and appreciate that you are together. That may just be why a baby, three year old, and an eleven year old had to be sick--to teach the world how to love each other even more. I know I've learned that lesson. Have you? Night, Jenny, Andrew, and that gorgeous chunk of love, Allie!
9:00pm-- Saturday, June 26th-- 9:00pm--Good and bad today. That's how it went. The morning started out bad--fever back, weight was up, fussy, etc. We were a bit down when we first woke up. She then got toradol and perked up after about an hour. She played and visited with us for three hours before crashing for the rest of the afternoon, only waking (and not happily might I add) for diaper changes. She is now fairly content with Grandma about to fall asleep again. Oh wait, sleeping peacefully now. As for me, I'm exhausted. I don't sleep well because I wake up almost every hour to check that she is still breathing. She had a fever in the middle of the night, so she had some more toradol. We had another two and a half hour rendezvous in the middle of the night. She laid there and cooed and talked with her animals. I got up, played on the bed with her (yes, we were playing at 4am, but I don't care because she was smiling!). I paid for that this morning. I was exhausted! Funny thing though, Andrew seemed to sleep through all of it! So, tonight, HE gets to sleep with the baby. I'm sleeping on the couch, and I don't want to be woken up. Her blood work came back with some big positives--she has an ANC. Let me give a refresher course--ANC stands for Absolute Neutrophil Count. This shows how much "fight" is in her body. It is calculated by the number of white blood cells times the segs and bands (also known as neutrophils) divided by 100. Less than 500 means makes a patient neutropenic, or vulnerable to infection (of course, they can still get infections from their own body too, as was the case with Allie). She has had an ANC of zero for three weeks since starting round two of chemo. It was zero yesterday. It was 196 today! This is a very good sign. Let's pray it continues so that she is able to beat this infection. Positives of today--having an ANC. A test came back today indicating that she is less sick than earlier in the week. The nurse, Ken, tried to explain it to me, but I didn't get all of it. Her tooth is finally starting to push through. She is also cutting a second one from what it looks like. She smiled a bit. Belly circumference went down to 52 centimeters. What else--SHE'S ALIVE!!! Some negatives of today--she is still spiking fevers. Dr. Golman said it can also be the new white blood cells forming in her body. As he explained, the first white blood cells that come back tend to be a bit stupid and don't know what to do (yes, that was really his explanation) and often cause fevers. It could be the teeth, but he doesn't think so. Her breathing is still very labored, but it has lessened a bit. Her weight is still up, mainly due to too much fluid. She still doesn't have much energy, and she is very dependent on the toradol to make her feel a little better. Andrew just told me that he is going to keep sleeping here at night until Allison gets better from this infection. He doesn't want to be at home, nor does he want a hotel. He says that he sleeps better on the uncomfortable couch then he does on our big bed at home. He only works five minutes from here (he says he loves this commute too!), so he can be here at a moment's notice if need be. I think he will work during the week. Picture time. I'm heading to bed early, so I will post a two pics, check on Sammy, Emerald, and Juliana (see the links page for their websites), as this is part of my daily routine, and kiss my girl goodnight. Thanks for those who picked a cell to own in Allie's body. She has her bone marrow biopsy in two weeks. Please take one cell to pray for. Pray that it comes back healthy and STAYS healthy. If you are still able to donate for Jordan and his family, please send us checks and or gift cards. E-mail me if you have any questions -- jscott665@hotmail.com. This family is so deserving. They need the assistance and I am asking those of you can to please give it to them. Night all. We love you, Jenny, Andrew, and Allie, the incredible, amazing, beautiful, three dimpled, Superbaby!
Friday, June 25th-- 10:40pm--Buckle up--its time for your daily roller coaster ride. Only this time, its ending with happy tears and joy!!!! You read right--our Allie is returning to us!! Right now, she is kicking her feet and playing under her toys while Daddy is on the bed with her. She is talking, smiling, and generally looking a bit more like herself again. The day started out rough, but wow, what a close its beginning to have. Let me walk you through the day-- Through the night, she still was spiking fevers. When we woke this morning, she still didn't seem to have any changes. We were close to getting near that state we were in yesterday. All of a sudden, I decided I wasn't going to let it happen. I sat up and promptly announced to Allie, "Today is a great day for you to come back to us!" Mama always knows best, right? Sure enough, she had two hours of awake time this morning. She didn't smile, but she didn't cry either. This afternoon, she was awake for over two hours, even watching Baby Einstein. We knew we were starting to have her come back to us when she started kicking as soon as she saw the giraffes on the screen. She loves the giraffes! I think we will have to do some zoo theme with a giraffe focus for her first birthday party! Yesterday, Dana called us to say that she had gotten a package from Katy Tartakoff, the photographer and all around amazing woman. Katy had taken two pictures of our family, blown them up, matted them and framed them for us. As soon as she got them, Dana headed straight to the hospital. She saw us in the middle of the funk. But those pictures helped bring me up a bit. This morning, Andrew was very upset and holding the baby. Funny that roles shift all the time--sometimes I am crying and he consoles me, and other times I'm the strong one. I took the picture that Katy sent, and pointed to the baby. I reminded him that both the baby in his arms and the baby in my arms in the picture is the SAME BABY. He promptly reiterated my statement that today was a great day to get our baby back, and we didn't look back to yesterday at all. Dr. Goldman ordered for her to have an EKG and another chest x-ray. He was worried about her heart. The chemo medicine, mitoxantrone, is prone to giving a patient heart complications. Nope, she looks fantastic. Everything came back normal. Her weight was up a bit, but he was prescribing a new medicine instead of lasix called bumex. She needed two transfusions--one of each red and platelets. That makes it official--30 transfusions--20 platelet, 10 red. Goldman seemed optimistic and pleased at how she looked. Her white blood cells are up another 100, totaling 500 today. She also had three monocytes today (see an explanation in yesterday's post). As Dr. Lenarsky, who came for a social visit, put it, her bone marrow is showing signs that it is regenerating. Of course, we won't know if it is regenerating good healthy cells or leukemia cells until her next bone marrow biopsy sometime the week of July 5th. In Katy's infinite wisdom, she told Dana to have every person own a cell in Sammy's body to pray for healthy results. They worked because Sammy is in remission. Anyone want to take on a cell of Allie's? My heart is full. She just fell asleep five minutes ago. She is still not doing great, but she is on the road. We had a total almost 7 GOOD hours of awake time. She hasn't completely turned the corner, but as my mom said today, she's got her blinker on! Sam is doing very well at home. We are so happy every time we read Dana's posts about their daily adventures. They are truly enjoying themselves as a family. Jordan looks fantastic! I say looks because I got to spend a lot of time with him today. Dr. Goldman approved him to come out of the room for the first time in a long time. We sat out by the elevators with Amy and Jordan and talked, laughed, and even touched on some serious topics. I thought he was a great kid before, but now I'm positive! He's so fun and funny. I really enjoyed his company. Amy has a birthday coming up on Monday. As a surprise, Matt coordinated for her family to come up to the hospital with cake, and had a friend cater Spring Creek BBQ (the friend is the manager there). We were lucky enough to be invited to be apart of the family for a little while. Jordan came too. It was wonderful. Dr. Goldman thinks he may be home in a week or less. I'm excited for them, but I will be sad to see them go. Amy said its the first time she thought she actually didn't want to go home--she doesn't want to leave us! What great friendships are being forged here! One of the first things I did when I saw the triumphant return of "Superbaby" was call Dana and run to the family room to tell Amy and Matt. We all share our joys and our hardships. Thank God for these women. One final thing (note a difference from last night's post to todays?), I got a visit from Karen Anderson, my former French teacher at Plano East. She has just retired this year after teaching French/Spanish for years--not to mention inspiring me to be the French teacher I became! The offer I got yesterday to work on the e-school online French class calls for two teachers to work together to develop the curriculum and teach the class. God is providing and watching out for me. The second teacher--Karen Anderson, one of the biggest heroes and best teachers (I say one because I also had Pauline Sinnamon for French, and between those two women, I have never been the same). I am so excited! Its still in proposal phase, but our names have been submitted, and hopefully, the e-school French class will be approved. Thank you all for the prayers today. You helped me see my baby again! Please continue to pray for pee, as she still does need to reduce some more swelling. Pray for continued recovery from this set back, and own a cell. Pray that leukemia out. With all my love to my Allie and Andrew and to you my friends, family, and beloved strangers, Jenny Thursday, June 24th--Another long one--hope you have the energy, it's a bit of an emotional roller coaster 10:20pm--Do you know that the only way I know the day and date is by doing my daily posts? I lose track of the days. I was stunned to see that June is almost over. I don't even remember it beginning. Funny how the world actually keeps going even though we live here in the hospital. Allie showed NO improvement from yesterday. The lasix didn't work. Her output was still positive for the day. That means that more fluids when in to her body then came out (in other words, she didn't pee enough). They are still giving her lasix every 8 hours. Her weight is still up to high, and her belly went back to measuring 56 centimeters. Keep praying for pee!! Her fever went away, only to return at 102.4 around 2 or 3 this afternoon. It had been fine all through the night. Her heart rate is up, usually between 165-180. That's high for Allie. Right now, its slowed to around the 130s, but her breathing is still intense, shallow, quick breaths. I put the phone up to Allie's mouth a few minutes ago for Summer to hear. She thought it was a machine in the room, but it was really Allison! Her breathing is so labored. She now has oxygen tubes up her nose, and she had to have nebulizer treatments three or four times today. Today was emotional. Andrew stayed the night and is staying again tonight. Neither of us wanted to away from her side very long. We hit rock bottom today. I didn't even shower until almost five because I didn't want to pull myself away from her. Tears streamed down our cheeks the majority of the afternoon. Andrew and I had several good solid breakdowns where we begged, pleaded, and even bargained with Allie to come back to us. We sat and told her about all the things she needs to live for--playing dollies with cousin Isabella, going to the zoo and seeing the zebras (her favorite!), going to school, doing Indian Princess with Daddy, having ballet lessons, etc. I even told her I was willing to be a suburban driving soccer mom if I had to! Dr. Goldman witnessed one of my breakdowns and was very worried for me. He even told Dr. Lenarsky about it. About 8:30 tonight, Lenarsky actually called from home to check on me. He is on call tonight, but he just wanted to discuss what's going on with me. He is going out of town for a week, but he is wanting to come make a social visit to check on us tomorrow. Getting an idea about how wonderful these doctors are? Dr. Goldman and I exchanged reading material today. He went home and found a book that he thought I would enjoying reading. What doctors do this? There should be more like them in the world. Goldman said that one thing to find comfort is that she isn't suffering right now. She is sedated with the fentanyl and not feeling the pain. That was one of our biggest concerns--we just don't want our sweet baby to suffer. He did give us a few good hopefuls--her levels are still great. Her blood gas test, measuring how much oxygen and carbon dioxide she has in her blood, came back great. Her chest x-ray only showed a lower part of her lungs that wasn't being used. That makes sense being that her breaths are so shallow. Her liver, lungs, kidneys, heart, and spleen look fine. No complications yet (I say yet because you never know--Dana worded it the best that chemotherapy is the gift that keeps on giving even after its done, so you never know what may happen). Her blood pressure is at a nice stable number, and her oxygen level is 100-the highest it can be. Its simply the breathing that is the biggest concern. She is using so much energy to breath that she can't do anything else. She was awake very little today. She cried at every diaper change, got really TICKED at the tubes in her nose, and did not appreciate the nebulizer at all. Other than that, she slept. I won't say she slept peacefully, but she slept. Her counts look much the same as yesterday, with only slight differences. She needed a red blood cell transfusion. Her whites are now at 400, and they detected 1 monocyte in her blood too. You may or not remember from the last go round, so let me refresh--monocytes are an indication that she is going to start having neutrophils, otherwise referred to as segs and bands. Neutrophils are the "fight" in the white blood cells. This is what makes her have an ANC. This is what builds up her immune system. Typically, the monocytes come first and then you will see some neutrophils in a couple of days to a week later. So, its a slow road, but her counts may start to come up soon. I didn't want to talk to anyone today. I called Angela to tell her something, and basically told her I didn't feel like even talking to her. And that rarely happens! I can talk to a tree stump. Not want to talk to my closest friends? You know I was sinking deep. I denied several calls. I was in a deep funk. My very good friend, Andy Crawford, showed up at the hospital around lunchtime to check on me. As soon as I saw him, I melted down. I cried in his arms for awhile before I could get it together enough to visit with him for a few minutes. He has been such a good friend to me over the past four years working at Rice (he's the best Spanish teacher I know!). I can't believe we won't be across the hall from each other next year, able to run in to say something stupid to each other at a minute's notice! He is going to Frisco ISD, and I am leaving the teaching profession for a little while. Well, maybe not leaving completely. I got a job offer today to be the leader of the Plano ISD French E-school program (an internet based correspondence class basically). It would involve first developing curriculum, which can thankfully be done here in the hospital room. I will have to attend some meetings, but they promise to be flexible with me. It would be part time work, but it would keep me in the loop with Plano ISD too. I felt a bit better after visiting with Dr. Elizabeth, the family life therapist. She just has a calming quality about her. After she came, I was able to be a bit more optimistic. Let's just say that I was losing some hope earlier. Andrew literally had to help pick me up and convince me to stop sobbing and help him change her diaper (it really does take two people to achieve this these days). My neighbor and friend, Jennifer Rayson, came by tonight to visit. Andrew and I talked with her for a little while before going back with Allie. She was wide awake and looking around. She stayed that way for about two hours--a marathon stretch for Allie. The only problem is that she gets very agitated and panicky when she is awake too long. Gosh, I feel like I could write forever tonight. So many emotions, so many fears. Sorry that I take you on an emotional roller coaster just reading my journal each night. Can you tell how much emotions have been all over the map today? I'll finish with one final thing. Andrew said something that brought me a bit of peace. He reminded me of how Allie stares off into the distance when she is awake, kind of towards the ceiling. You can tell she is focusing on something, but you can't tell what. He said, "You might think I'm goofy, but do you know what I think she see?---Your dad. I feel his presence in the room. I think he's here with us and protecting his grandbaby." Are you there, Daddy? God I hope so because I miss you so much. You would be so proud of your granddaughter. She is feisty, a little like you! I just wish you had made it to be here to meet her. I think Andrew's right. My daddy is her angel, just like she is ours. Enough tears for the night. Katy Tartakoff says that we should remind ourselves each night of things we are thankful for. I am thankful that Allie's organs are functioning properly. I am thankful that she didn't go to PICU. I am very thankful for my marriage and love between Andrew and me. I am thankful that I got to be that little one's mother one more day. I pray for another one tomorrow. Love to you all, Jenny
Wednesday, June 23rd--A long post, hope you make it through 9:41pm--Before I get started with all the details, let me first say Happy Birthday to Allie's Aunt Amie and to my friend Summer! Amie, it was so good to see you last weekend. Thank you for being here for us even when you're far in Utah. Sorry we didn't get a chance to call you or Summer--when you read below, you'll understand. OK, where to start? Let's go with last night. It was another rough one. She vomited in her sleep, struggled to breath, and even got herself wrapped in her lines! I woke up to her tangled in her lines, including one wrapped near her neck! Obviously, I freaked. I got her unwrapped and went quickly to the nurse's station for them to check her. She was fine, no problems. That was a terrifying moment. I woke up periodically through the night, and woke up for good with her vomiting at 6am. Someone came in at 7am to do a chest x-ray of her. Now that made her happy. Dr. Goldman came in at 10am and was a bit concerned about how she looked. She is still having trouble with breathing. Her oxygen level was good, but its the rate at which she is breathing that concerned him. She was grunting, moaning (almost like a puppy), and flaring her nose. Her pain level seemed to be fairly high, so Dr. Goldman decided to put her on a continuous drip of fentanyl. She seems to do better with that help. I was a wreck this morning. I must have had about three or four breakdowns. One to Dana in the kitchen, at least two to Angela on the phone, and one with Matt and Amy in the hall tonight. I'm so scared for my little baby. She doesn't look good at all. My fear climbs with each minute. Dana has been incredible for me. She gave me a much needed huge this morning and called three times to check on the baby. Thank you, darling, so much! Its hard to express how much your friendship means to me right now! I hope you know what I can't put into words. We are developing such a friendship with Matt and Amy too. We all cried together, and they helped me remember that rough days happen, but so do good days. Dr. Goldman came back this afternoon and we had a very scary discussion. With all the fluids that have been pumped in her body, she is retaining too much and has gained too much weight. Her belly was rock solid this morning. This is what was causing the difficulty with her breathing. She needed lasix. This will help her pee and hopefully get the belly down. That was the scary part though. What he said was that his fear is that with all the problems she is having breathing, her body may just give up and stop all together. Its taking so much of her energy to breath right now that she can't do much else. His concern is that if we can't get the swelling down (causing it to crush her lungs and other organs), it could potentially be fatal. He called PICU to reserve her a room. If she didn't get better in a few hours, he wanted her admitted. I sat and cried with just the two of us in the room. I admitted my fears about today to him and also talked to him about one of my big fears--What if this round didn't work either? What if, just like the last round, her leukemia comes back with a vengeance again? He said that he felt, without being too overly optimistic by saying this, that this round has been showing more positive results (really? I don't feel very positive!) that leans more towards her killing off the leukemia. He wants to continue to transplant even if she has 10% leukemia or less. He did tell me something interesting during this time--a piece of the cord blood from Milan that will be her donor has arrived here in Dallas for testing. They are going to put it through some tests here at the lab at Medical City to verify again that it is a match for Allie. If so, they will have someone go and get it from Italy when the time is right. He returned around 4 to tell me that her blood gas test (to see how if she had too much carbon dioxide in her blood--I didn't completely understand, but I've been in a bit of a haze today) came back negative. Her chest x-ray came back beautiful. The blood cultures from today and yesterday came back negative. This means that the vancomycin is working to help kill off the bacteria that caused her infection. Her temperature has not gone over 99.8 since mid-afternoon. She needed some more protein today, so she got some through her IV. Her other levels that they check every day came back fine (indicating good organ function). He was still concerned for her breathing. He left telling us that his prayer was that he sees us here in this room tomorrow morning, not in PICU. Since 6, we have seen some positives. Her belly is much softer. She measured 56 centimeters this morning. At 7:30, she measured 53.75. That means she is peeing some out! She was awake for about two hours. She didn't cry or fuss, but she didn't smile either, nor did she vomit. That was the most awake she has been today. The rest of the day was waking up to vomit, have a diaper change, vomit again, cry, fuss, and fall back asleep exhausted. She is sleeping right now, with her breathing being closely monitored. Andrew is sleeping on the couch here in the room. He didn't want to be far away tonight. He will go home in the morning to shower, get clothes, and take care of Brandy. My brother, Jeremy, is coming in town tomorrow, so he will stay at our house (Jennifer Rayson--he will take care of Brandy starting tomorrow. Call me) Even though Allison is having some improvements, she is still in a very critical state right now. As always, your prayers are needed. Some specific prayers include--get her to continue to pee (you've probably never prayed for pee before, but that's what needs to be lifted up to God--urine!), her breathing to slow to a better pace, her pain management to continue to be in check, her blood cultures to come back negative, and for her fevers not to return. Good things are happening for Jordan. He is starting to be weaned off TPN (Total Parenteral Nutrition) because he is eating a bit now! He even special requested a home cooked meal from Amy (thanks for dinner tonight, Amy!) He woke up today asking for Andrew to come and play computer games and set something up for him. Andrew didn't make it over there today, but he promises to go tomorrow. Sammy went home today. The hope is that he doesn't return until its time for chemo and radiation before his bone marrow transplant on July 19th. Dr. Goldman prepared Dana that 80% of the patients come back after this round with a fever. Please stop and pray for Sammy that he is in the other 20%! We want his body strong going in to this treatment. I added a few more website addresses to our links page, two of which are other children I have heard about. Emerald is a 10 year old with a tumor in her spinal cord, and Juliana is a 3 year old with ALL. Juliana's mother teaches at Clark High School and her daughter has the same team of oncologists. If you get the chance, check out their sites. The more we educate people about our children and their illnesses, the better. Oh, and be on the look out for our Katy Tartakoff pictures! We ordered them today, and we will be posting some of them soon (when Andrew gets the chance to scan them). It was great to talk to you tonight even though we got cut short. I hope I see you again soon! To end with something hopeful--I am wanting to put together a team for the Light the Night Walk for the Leukemia and Lymphona Society. This is a two mile walk where every participant carries a balloon in honor or memory (honor for us) of a leukemia patient. The walk is Oct. 23rd in Plano, TX, leaving from The Shops at Willow Bend. Registration fee is only $25/person, but we can certainly collect more. I discussed this with Matt and Amy already, but I haven't talked to Dana about it yet. What I would like to do is put together a team of anyone who would like to walk called 12th South Angels that walks in honor of Jordan, Sammy, Allie, and all our friends up here on the floor. I can probably have some students make us big banners to walk with, as well as have pictures of the kids on all our shirts. Please e-mail me, jscott665@hotmail.com if you are interested in participating. Children and people of all ages are welcome to walk. For more information, go to www.lightthenight.org I did this walk about three years ago for no one in particular. I had no idea that I would ever be walking for my daughter. Hopefully, by that point, Allie can join us in the stroller! Wouldn't that be wonderful? Thank you so much for all the guestbook postings. I love reading each and every one of them. It still amazes me to see people say that they follow our story every day and that we have been an inspiration. Really? Because all we are trying to do is keep our baby alive. Your words and prayers mean more to us than we will every be able to fully say. My two loves are fast asleep, and I better think about joining them. I love you all! Jenny
Tuesday, June 22nd 8:25pm--Wow, I'm tired. Last night, Allie's oxygen levels were not up to par, so Karen called respiration therapy. They brought her up a blow by (blue tube that blows oxygen near her face) that has been on since then. Our bed had to be put to a more upright position. Now that makes for fun sleeping. Allie will only sleep with me. Karen was commenting on how as soon as she knew I was next to her, she would lean her whole body towards me. I woke up with her face in mine several times. Even though I tried to move her, she still wound up back in my face. I had to put the blow by in between us to make sure it was giving her enough oxygen. That thing is loud, so with the oxygen, being upright, and having Allie in my face, I didn't sleep well at all. The day was much like yesterday except maybe even more fussy and less awake. She had to have another platelet transfusion today. She had one yesterday, but a fever quickly eats up platelets. They are actually calling to see if she needs another platelet transfusion tonight because her gums are bleeding. We think it is because of the tooth she is cutting. That is where the blood is coming from. I don't think most kids bleed much from cutting teeth, but then again, what's normal about our baby? I can't exactly go off of regular standards anymore. I swear, if its not one thing, its another. I got a chance to go into the hall a few times when Andrew was here this afternoon. I spent a bit of time with Sam and Dana in the kitchen while Sammy pretended to hose down the refrigerator using the outlet plug to his IV pole. He then proceeded to use a sponge for dressing changes and clean the inside trays of the fridge. I've never seen a kid so enamored with cleaning! Allie's infection is the most common after high dose Ara-C. She is being treated with a strong antibiotic called Vancomyacin. Karen just had to draw her blood to check the levels of "vanco" in her bloodstream. From this, they can decide if she needs more or less. Dr. Goldman is our doctor this week, and he said it may take several more days before we start to see her feeling better. When she's awake (and with all they are giving her, that isn't often--she had to have benadryl for the platelets, fentanyl for pain, toradol for the fever, and three antibiotics today!), she moans. She vomits every time she is awake. Her vomit is a green bile. The vanco is giving her diarrhea, so we are just having lots of fun on both ends. At one point, she was having both at the same time. Thank goodness for the hospital because I don't think I could have done it all myself. Kochumol was my saving grace today. I'm exhausted. This room gives me a sore throat and a headache, so I think I will end now. This is probably one of my shortest posts. Posts take a long time (its 8:45 now) and I just don't have anymore energy. Love to everyone, Jenny
Monday, June 21st--Back again 9:00pm--Allie is awake for only the second time in about fifteen hours. When her fever breaks, she is feeling a little bit like herself. The fever goes down with the toradol and gives her about an hour or two of alertness. Then, the fever rises back up to about 102.8. The cycle goes every six hours. The fear is that the temperature goes above 104. That is when the risk of seizures is high. We have been keeping damp towels on her head (Andrew calls it her hat) and under her armpits. Dr. Lenarsky came back this afternoon with a report from her blood culture. It returned positive with an organism. It is a strep bacteria. How did she get it? Believe it or not, from her own body. We have bacteria in our bodies at all times. Our white cells help us ward those off and not become an infection. Allie has only 200 white blood cells. Without an immune system to protect her, she is very susceptible to the bacteria in her body. She is on three different antibiotics and the toradol for pain management. She has a slight rash from one of the antibiotics, but that was to be expected. Lenarsky said it will take several days or more to rid her body of this infection. The antibiotics help it from getting worse, but without the white blood cells, she can't fight it off and get better. Sammy is back on the floor. That child is one of the most adorable three year olds I know (because of course, I know Josh Krieger, and that kid is gorgeous!). I knocked on Dana's door to offer her dinner. From his bed, Sam yells, "Who is it?" I said my name and saw his little head peek out from the bed. "Hi Jenny! Hey Jenny, you look cute!" He and Dana then came into the hall. Andrew and I stood and talked to them. Sam got some hand sanitizer wipes and proceeded to clean his IV tubes. He explained to us all about infection and getting off the germs. It was so cute! He is in until Wednesday, then home until July 19th. That is when he comes in for a week of radiation and chemo before the big bone marrow transplant on July 27th. We're moving into scary territory for all of us. I'm tired, so I don't think I will write much more. I just spent quite a while in the hall talking with Amy and Matt, Jordan's parents. Since getting the laptop, Jordan has perked up a bit. Not much, but he is showing interest in it. We think we might even have convinced him to set up a website through caringbridge.org. Matt was telling me about how when Jordan first got diagnosed, he had to sell his Harley to help pay medical bills. He is a truck driver and has almost lost his business because they are financially in a bind. As I mentioned in last night's post, I am asking for help for Jordan's family. Karen, our nurse, and I were talking about Jordan last night. She said that he never complains. He has gone through so much (including a 105 degree fever that had him seizuring and in PICU for a week), and has taken everything with such courage. His little brother bravely donated his bone marrow, coming out of it just to say, "I want to see my brother now." He, too, never complained. PLEASE, if you can, donate to Jordan's family. The could use gift cards (I think Walmart would be great or for restaurants) and of course money. You can make a check out to Amy Morgan and send it to Andrew's office. The address again is 6200 LBJ Freeway Suite 105 Dallas, TX 75240. If you still want to do something for our family, this is what we want. We want them to see the love and support that we have gotten. They swear that something has been happening in Jordan. Your prayers are helping him. Here are a few pictures to finish off the night with. Isn't it funny how even though she is so sick, she just looks so beautiful? What an amazing child. We refer to her as superbaby. That's what she is, a super, amazing, incredible baby. Love to you all, Jenny, Andrew, and Allie
Monday, June 21st--Allie has an infection 10:00am--Just a quick update from last night's post. After I finished, Allie woke up crying again. Her cry was turning in to a moan. By 11pm, her temperature was at 103. Her nurse, Karen, immediately paged Dr. Lenarsky to let him know of the situation, and started her on antibiotics. She also brought in some tylenol to help bring down her temperature. Karen has only had Allie once the first week we were here, so she was not aware of Allie's vomiting with oral meds. I warned her. Sure enough, I was cleaning up green vomit (all she has in her stomach is bile and lining so that is what she's throwing up). She called Lenarsky again and he prescribed an IV medication that is similar to ibuprofen for her. After having a good cry (that's me that was crying this time) and cleaning up a little more vomit, I finally fell asleep around 2am. At 4am, she was throwing up in her sleep. I noticed that she was getting a blood transfusion too. We slept until 8 when Kochumol came in and changed her diaper and weighed her. Since yesterday, she has gained a pound. That means, too much fluid retention. She looks very puffy this morning. They will put her on some lasix this afternoon to help her pee it out. Dr. Lenarsky came in around 9:30 to talk to me and check on Allie. He reminded me that this is as he expected. She most definitely has an infection. Its not just cutting a tooth (wishful thinking on my part). Today, they are continuing to monitor her. Her white cells are at 200 and her ANC is zero, so she has no ability to fight this infection. They have given her three heavy duty antibiotics, drawn blood for blood cultures (to see if an organism grows in it--that will tell us the nature of the infection), and ordered to have a chest x-ray. Her platelets were only at 10,000, so she will need a platelet transfusion later today. As of now, her oxygen level is good at 100, the highest it can go, which means her lungs are doing alright. However, he has prepared us that there may be a need for oxygen later on in the day or tomorrow. Her heart rate is high, but that goes along with a fever. What I need from you is prayers today. Allie is in a critical state. Luckily, we were here in the hospital when this all happened. There is a comfort with being here instead of home. Home terrifies me. If you get the chance today, please write even a quick note in the guestbook. We need those words of encouragement today. I'll write again tonight for more of an update. Thanks for checking on our beautiful girl. |
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