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Week 6 Sunday, June 13th-- 8:45pm--I can handle more days like today. It was one of the best days we have ever had here together in the hospital. Allie and Grandma are rocking gently in the rocking chair right now, their special time. My heart is full with love from my family and I feel positive about this round of treatment. Of course, it is a guarded optimism, but it feels good nonetheless. Last night, I had some late night visitors, Lori and Leah Watkins. Leah was a student of mine for two years and is now heading to the tenth grade this year. From the first day she was in my class, we hit it off. By the end of the two years, we were almost like a sisterly relationship (though she still calls me Madame, of course, I still made her do her work!). Lori was my roommate last year on the France trip, so we became very close too. It warmed my heart last night to see them. Leah just sat next to me with her head on my shoulder while we talked about the baby. I had promised my mom that I wouldn't visit too long since she was watching the baby. I think I stayed out in the waiting room about thirty minutes longer than I promised because I couldn't pull myself away from Leah. It made a perfect ending to my day. Allie crashed around 10:30 last night with the aid of fentanyl. I love that drug because it made her sleep until 8am this morning! Yeah! I woke up to Andrew coming in at 8 and giving us both kisses. Instead of the morning screaming that Allie was doing a week ago, Allie woke up cooing and making raspberries. And so the day went. She laughed, smiled, cooed, talked, made raspberries all day long. For nap, Andrew, Allie, and I all squeezed into the hospital bed and slept for about an hour. Life couldn't have been any better for us at that moment. Dr. Goldman is our doctor this week. The first thing he says as he entered the room was, "I missed you sweet baby!" Her white count has dropped again to 800. She has finished the blue chemo, mitoxantrone. Her pee will still be blue for about two more days. It was a funny blue. The best description I have heard is Michelle describing it as "Six Flags water blue." Dr. Goldman said some of his patients refer to it as Smurf chemo. Tomorrow is the myelotarg. They will be closely monitoring her as it infuses (takes four hours). Commonly, patients have fever, low blood pressure, chills, and queasiness after getting the medicine. They will be monitoring her liver for damage in the following days and weeks to come as well. I'm nervous, but I also believe this is the right treatment. A few people have looked up some research for me, and all the research has come back that myelotarg is proving to be effective in harder cases. An eleven year old boy, Jordan, that is here on the floor got the same medicine in Feb. Dr. Goldman said he responded well to it. He had his bone marrow transplant (his little brother was a perfect match) last week and is completely in remission. Let's hope for good results like that for Allie! Andrew's sister Amie and her husband Michael came in from Utah for a visit with our niece Isabella. Izzy came up to the waiting room and even got to see Allie through the window . As Izzy and I sat and talked in the waiting room, she told me, "Aunt Jenny, Allie's getting better." When I asked her "really?" she answered, "yeah, in there!" as she pointed through the window to the floor. Amie says that Izzy tells her this every morning. As a family, we walked down the street to go to Luna de Noche for dinner while my mom watched the baby. She didn't mind since she isn't a big Mexican food fan. We had a great dinner. So, that's the day. Pretty perfect in retrospect. Tomorrow is another day, and we pray for continued smiles and happiness for Allison. A friend of mine told me that she appreciated the specific prayer requests I give instead of just the generic please heal Allie prayer. Here are some specific things to pray for our family this week: Pray that Allie reacts okay to the myelotarg medicine without to many negative results. Pray we stay infection-free. Please pray for my grandmother (mom's mom) who has been hospitalized today. She had surgery the week Allie was hospitalized and is not doing well. Pray for Andrew's grandmother (dad's mom) who has just moved into a nursing facility here in Flower Mound. Pray for Sam Eisenberg. His bone marrow test and spinal tap is tomorrow. He really needs to be in remission (less than 5% of blasts, or leukemia cells) and to have no leukemia detected in his spinal fluid. He will then be hospitalized for the next two days of high dose Ara-C and will be thirty days out from his bone marrow transplant. Pray for all the parents here on the floor, including Andrew, me, Dana & Dennis Eisenberg, that we can continue to endure and stay strong for our children. Thank you so much for those prayers. I just know they help! Here are a few pictures of the weekend. Enjoy! Love, Jenny
Saturday, June 12th-- 9:00pm--Sorry that the post didn't show up until this morning. After I finished, we battled internet dial-up for thirty minutes trying to get the thing to post. After thirty minutes, we decided not to worry and head out for the night. Why waste the time we can have away together sitting in front of the computer? Didn't make sense to me. So, we headed off to the hotel. Sad thing is that my hospital bed is more comfortable than the hotel bed! But, I could take a tylenol PM, so it didn't, matter. I was out like a light for ten hours--yipee! Andrew and I had a wonderful conversation last night about Allie. We joked that we always knew our girl was one in a million--now we have the statistics to prove it! Andrew is right when he said he wouldn't trade Allie for all the healthy babies in the world. Our girl is perfect the way she is. Plus, she is becoming the most loved child around. I'm still amazed at how many people have opened their hearts to us--family, friends, neighbors, strangers. They have all given us such an outpour of love. Andrew said that Allie may have touched more lives in her five and a half months of life than some do in an entire lifetime. Nothing about this child is ordinary. Dr. Weinthal says she is extraordinary in every way--he has no idea! Allison has had a fantastic day! Nothing but smiles. We came in at 8:30, just in time to hear the doctor's report. Allie's white count is now at 900! The chemo is running rampant in her little body and kicking some serious butt. Tomorrow is her last day of this chemo, and then she gets myelotarg on Monday. They have decided just to do it on Monday. We are preparing for it to be a hellish day. Myelotarg is a pretty potent drug, so we'll see how it goes. Andrew's dad and stepmom, Drew and Jane (aka Chili and Sita to the grandkids) came in today. Drew's mother was moved to a nursing facility in Flower Mound today, so they came in to help her get settled. Allie was asleep when Jane came in to see her. She woke up (with a little probing from Andrew and me) and immediately smiled at her. What a happy baby! My mom has been rocking her for over an hour--a very difficult task for my mom that is just so grueling to her :) --and she has not fussed once. As for me, I've had a fantastic day too. My friend, Jennifer, who lives down the street, came to have lunch with me. Guiltily I admit that we spent almost three hours at Black Eyed Pea talking. She is expecting her second son in four weeks and looks great! I guarantee you that I didn't look that good at 36 weeks (just ask my students--I was waddling, wearing slippers because my shoes didn't fit, and was EXTREMELY irritable). When I came back in the room, my two sweethearts were playing together. Andrew had Allie in his lap while he was playing his gameboy. Not purposefully, I wiped out his entire game on accident. How was I supposed to know he had it in sleep mode? Tonight, my friend Marie came by to visit too. Shamefully, my French is nowhere near Marie's. Of course, that may be a little due to the fact that she is really French! Marie teaches at Robinson Middle School and had a sweet baby named Ian just weeks after Allie. I will miss her next year, so we will have to have baby playdates with the kiddos. I asked Marie to get me another giraffe toy, Sophie, from France the next time she talks to her mother. Sophie looks a little too much like a dog toy for my comfort. I just see her eventually death by golden retriever, so it will be nice to have a back up. There are several moms trying to betroth their sons to my daughter. Marie refers to her son as Allie's boyfriend. When she was five weeks old, Joey informed me that he was going to marry Allie. Now, the funniest of them all is the plan to marry Sam Eisenberg and Allie. If you get a chance, check out Sammy's guestbook. Dana's family has already got the wedding planned! Dana's friend, Kristin, who I had the pleasure of meeting the day Katy photographed us, also has an 11 month son that everyone fondly refers to as "Jake the Giant Baby." He may be the other guys' strongest competition for Allie's affection since as Kristin says the two of them can keep up with each other at the dinner table! My mom has so graciously stayed to entertain the baby until I finished typing my post. I better let her get some sleep since she let me get some last night! Let's hope tomorrow brings us even more smiles. I promise new pictures! Love to you all, Jenny
Friday, June 11th 6:30pm--Wow, two days in a row I am able to do my post early. Today was an okay day. It wasn't great like yesterday, but it wasn't bad either. I don't mind these days at all. Keno was fun last night. The hardest part about it was not being able to hug people. The doctor wanted me to make minimal contact with people to help not get any germs. When this is all over, I am going to hug people like crazy! It felt so nice to do something normal for a change. Angela sat next to me and we kept chitchatting through the whole game. It killed me to leave. I stuck around longer than I probably should have because I was just enjoying the conversations with everyone so much. I even won a gift! Sorry, Terri, those crosses are mine! Allie's white blood cells are already at 1,000. This has happened much faster than the last time. Last go round, she went to 900 for one day and then her counts went up past 2,000. This time, she is neutropenic right away. That tells Dr. Weinthal that the chemo is killing off the leukemia cells (and everything else at a rapid rate). Let's just pray this works! She has finished with Ara-C and only has mitoxantrone (the blue chemo) until Sunday. If all goes well, she will get the myelotarg on Monday. She is supposed to get very sick this go round. I had a massage today! Frances, my mother in law, came with lunch from Cafe Express, and then she treated me to go have a massage here in the hospital. It was very relaxing! The girl says, "Wow, you're really tense--gee, do you think?" On the way back to the 12th floor, I started feeling a burn on my arms and my legs. I had an allergic reaction to the lotion! OK, Dana, the black cloud may be moving my direction! As soon as I came in the room, I immediately took a shower and it made a huge difference. Good thing for the massage today because I was so sore. Sleeping in a twin hospital bed with an infant is not the most comfortable sleep I have ever had. I can only sleep on my right side facing Allie. I attempted to roll over, but that was a no go. Out of her deep sleep, Allie began screaming. As soon as I rolled back to face her, all was right with the world again. Her new thing is to hold my face while she sleeps. I don't mind it except for every once in a while when she curls those fingers into my face and rips into me. If at the end of this whole experience I only have one eyeball left, you'll know why. Andrew and I are on our way out. My mom packed a bag this morning with the intent of spending the night tonight. So, here it is, 7pm and we are leaving. Woo hoo! I think we will just go to the hotel and watch a movie or so. I'm off! Jenny
Thursday, June 10th 6:15pm--I'm doing my post early today because I am leaving the building this evening! I am going to meet Angela and some other women for our Keno night. We play once a month, so I thought this would be a good way for me to get out. It will be a little strange though. Allison has gone with me to Keno since she was born. It will be strange to try to play without someone in my lap. Today has been a great day. Allie's mood is restored to her loving self. The chemo is working to kill off the leukemia. As it does, Allie feels a little better. She is still in pain in her legs from what I can tell, but her cries are less frequent. I woke up at 5am freezing. Our nurse, Michelle, had turned down the temperature last night while they were repairing Allie's line, but she had forgotten to turn it back up. So, I got up to change the temperature. Allie noticed my absence from her side (she sleeps next to me these days) and startled a bit. I think something caught in her throat because she began to gag. I held her up and she vomited just a bit. Not even a cry. She laid back down with me, but she was wide awake at that point. For the next hour and a half, we just laid there next to each other cooing and talking. She had me giggling because I would kiss her and she would return my kisses by making raspberries. It was adorable. I think it was one of the best moments the two of us have ever shared together. I knew I should have tried to make her sleep some more, but I didn't want to. I was enjoying her too much. She finally crashed at 6:30 and the two of us slept until 10 this morning. It was great! Dr. Weinthal came in shortly after we woke up. Allie's counts are continuing to drop, now at 2,000. She will be neutropenic in a day or day with the way she is progressing. He was very pleased at how she is doing. He talked to me a bit about the plan they have for Allie's treatment. All three doctors got together and discussed her case for almost two hours. They have decided to try a drug that is not used very often, but that has had some effectiveness in relapse cases. Allie is not a relapse case, but they are treating her leukemia in the same manner since it is proving to be so persistent. He would like to try this drug, called mylotarg, starting Monday. Apparently, it's some potent stuff. I don't completely understand it, but he describes it as an antibiotic with poison attached to it. Huh? She will get this on day 7 & 8 of this chemo round (being Monday and Tuesday). It will probably make her very sick and has a chance for liver damage. Due to this fact, they are going to keep us here in the hospital even longer. The plan is that if they can get her into remission on this round (less than 5% blasts in her cells once her counts have increased), then they want to go straight to transplant. The transplant will then be pushed forward and happen about the end of July. Before they do her cord blood transplant, they will hit her with one last hard round of two new chemo drugs. This is an attempt to wipe out all her cells. They have already found a cord blood match in Milan, Italy. She'll be an international baby! (she was already going to be anyway, right?) With these new changes, Allie and I could be living in the hospital until about mid August or September with very few days home in between. We're in for the long run now. Hey, if this is what we have to do to make our baby better, this is what I will do. The photo session with Katy Tartakoff was wonderful. Allie continues to amaze us. After days of crying, I didn't know how she would react to having her picture taken. She was incredible. We set up in the center of the room (not a lot of space to work with in this room). She started by taking pictures of just Andrew and Allie. Then, it was time for Allie and me. She then took two rolls of the three of us. Katy approach towards photography is capturing the love between those in her pictures. She commented that she could tell there was a lot of love in this room. Allie smiled, giggled, and stuck her tongue out at the camera. She was naked but her diaper in all the pictures. Katy said that the baby was such a good subject. She said that she has healthy kids in her studio that don't make it through more than two rolls of film before they fuss and throw fits. She took five rolls of us. It was exactly what we needed. OK, I'm off to have a little "me time." Allison and Andrew are sitting on the bed together making faces at each other. I think it will be good for them to have this daddy/daughter time too. I tell you--that kid has him wrapped around her finger. She did before she got sick, but it's even worse! I love it! It makes leaving alright for me. I don't feel worried at all. Love to everyone out there! Please keep sending your posts to the guestbook. They mean a lot to us. Love, Jenny
Wednesday, June 9th-- 9:00pm--The day started out rough, but so far is ending positively. Allie woke up around 7 crying in pain. Her cry is now hoarse from all the crying she has done in the past few days. She was awake for quite a while, just looking around. No smiles though. When she moved at all, she cried. You could just see on her face how much pain she was in. Her white count has dropped from 10,000 to 3,000 in just two days. Dr. Weinthal says this is a good thing because it shows that the chemo is doing its job by killing off her cells. Her face was so pale this morning. She had big white circles around her eyes. Transfusion needed! After chemo, she got a red blood cell transfusion in the afternoon. Wow--what a difference that made! She immediately pinked up, and starting having some energy. At four o'clock, Dr. Elizabeth, the family life therapist, came to visit with me. She is going to come everyday while we are in the hospital to help me cope a bit. It's a comfort to talk with her. While Dr. Elizabeth was in the room, Allie sat in my lap and stared at her. She even smiled at her!! No fair! She began to fuss a bit, and we decided to try a little bottle to see if she would drink. She drank two ounces! That was the first time she has had anything to eat in three days. It brought me to tears. Since this afternoon, fussing has been kept at a minimum. She is watching Baby Einstein right now while I type. My mom and her best friend Jessie spent the day with us. They got big smiles this evening. Made us all feel so much better to see her looking this way. I just hope and pray that she continues on this path. She has to do well and respond to this round! Katy Tartakoff, the photographer from Denver, is coming tomorrow to take our pictures. Through the generous donations of the Eisenbergs and their kind friends, we are having the chance for Katy to photograph our family. Dana made it her campaign to raise enough money for Allie to have this opportunity too. I think it took only a few days to raise the money. We couldn't believe it! The generosity of total strangers astounds me. I don't fully understand it sometimes. Speaking of the Eisenbergs, I haven't updated about Sam in a while. He is doing wonderfully well at home! He went to the clinic yesterday and came home without needed any blood transfusion. He will remain at home with his family through the weekend, and then his next bone marrow biopsy is Monday. We are hoping and praying that the results will show less than 5% leukemia left in his body. Please help us pray for Sammy too. He then gets admitted for the next round of chemo--high dose Ara-C for two days, then back home for a week to return for two more days of Ara-C. After Monday, he will be thirty or so days away from his bone marrow transplant. His twin brother, Ethan, is his match. Hopefully, all will go well for Sam and all the Eisenbergs. They are such great people. Dana came to visit me Monday night after hearing the news about Allison. Just talking to her made me feel better. She is one of the only people I know that truly know the fear that I am experiencing because she has the same feelings. In my prayers, I pray for Sam every night, but I also thank God that we have met them. Allie needs to go to sleep now and I am going to attempt a bottle. Love to everyone! Jenny
12:25am--Back Again! Wow! Since signing off a few hours ago, we have had a little bit of excitement. Right as I sent this post to be updated, Michelle, our night nurse, called me over to her and Allie. While trying to push her "pre-chemo" drugs through her line, she noticed a leak. Not good. Deb, the oncology nurse, is the pro at line repair. Michelle called Deb. The good thing was that we still had the other line, so that we would be able to still administer her chemo. At least, we thought we still had her other line. That one got a clog! Within the same ten minutes, both lumins to her catheter were unusable. We had a problem. Michelle was going to put a medicine called TPA into the clogged line to help get it unstuck. It would take an hour to see results. I called Andrew to tell him of the situation. If they couldn't get anything through, they were going to have to start a new IV, not an option we wanted. Luckily, Andrew re-checked in to the Homestead Suites this afternoon (thank you, Murphy family!). He was here in five minutes. Allie got completely unhooked, so we sat together near the table (we have a couch and a table next to each other). Andrew and I took the time to look through all our pictures taken of Allie since coming to the hospital. It served as a good reminder to show us how far we have come. For an hour, we sat together as a family and talked. Allie was awake and alert. She didn't fuss at all. Finally, at midnight, Deb was ready to repair her leaky line. This was a neat process. Allie was incredible. She didn't fuss at all. She squiggled and squirmed, but didn't even make a peep. So, here it is 12:30 in the morning, and my child still has not gone to sleep. Should be an interesting night. I just checked on her--little stinker was playing with her toy giraffe, named Sophie, and smiling at me! The reason why Andrew is able to stay at a hotel now is because Brandy has gone on vacation. She is having playtime with the Murphy family. I taught Sean Murphy this last year in my PAL class. His mother, Cheryl, became my godsend this year. Since the PALs walk to the elementary school that is over a mile walk, this presented a bit of a problem with my pregnancy. Cheryl was kind enough to meet us at the middle school and walk with the kids while I drove in my car and met them there. She continued to do this even during my maternity leave and while I was back. When Angela had to be gone for a few days to El Paso, I asked Cheryl to babysit Allie. She is the kind of mom I would like to be one day. All three of her boys are great kids. So, Cheryl called yesterday and offered to take Brandy. They have two other golden retrievers, so they didn't feel like one more would be a problem. Andrew checked in to the hotel this afternoon and dropped off Brandy around 5:30 tonight. He said he was a bit embarassed when he did though. Brandy NEVER has accidents at home. The first thing she does at the Murphy house? Poops on their carpet!!! She was just overly excited to be there. New environment for her. We are so grateful that the Murphys took her. Andrew didn't think he was going to have a hard time staying alone at the house, but I think it was harder than he imagined it would be. He didn't want to have to be there alone anymore. Well, I think I will sign off again tonight. Just wanted to type about our mini drama before I forgot all about it. Allie is starting to fuss because she is really tired (hasn't napped since about 3 this afternoon except for about thirty minutes). Goodnight.
Tuesday, June 8th-- 8:00pm--Awake moments were few and far between today. For the majority of the day, Allie was kept under pain medication that knocked her out. She was awake a lot this morning, from about nine to 1. Since then, she has maybe been awake for thirty or forty minutes. You can just tell that she is in such pain. If you move her, she just cries. Her legs are scrunched up towards her belly and she will not straighten them. The majority of your bone marrow is in your legs and hip, so it is logical that it hurts her there the most. Makes it very difficult to change her diaper, or even pick her up for that matter. The Ara-C lasts for four days. She gets it every twelve hours and it takes about two hours to infuse. The second medication, mitoxantrone, starts on day three and lasts until day six. It is blue in color and will make her urine and the whites of her eyes blue for a few days after it is given. They had to an ecocardiogram before beginning this procedure, so the cardiologist came in this morning. He didn't comment, so I don't know if things looked well or not. Side effects of this round are basically the same, though we may not see them right away. The aftermath of mitoxantrone usually does not show up until one to three weeks after it is given. Her counts will be extremely low. What is left of her hair will most likely fall out. The concern is organ damage--specifically the kidneys, heart, and liver. They will be monitoring these things closely, but it is a possible side effect. So, all in all, today was a blah day. I just said that to Andrew, and his response was that is was really a good day--she is still alive. Good point. Everyday that she is alive is good. We are taking it one day at a time. I look at her and feel such love. She woke up next to me this morning. She just stared at me for over ten minutes. We just looked into each others eyes. At that moment, my heart was full. Please continue your prayers for our baby. Pray that she handles this chemo and that the medicine helps take away some of the pain she is experiencing. Pray for my family. We are all struggling emotionally with this news. I am numb at times and hysterical at others. My emotions are running wild. I probably should think about antidepressants. It may be time. Signing off now. All my love to everyone, Jenny
Monday, June 7th--Bone marrow and spinal tap results in. 3:00pm--Last night was a horrible night. Andrew and I each only got three hours of sleep because we were up taking shifts trying to console her. We tried to give her medication twice, per Dr. Weinthal, but she threw them up both times. By the time we were arrived here at 8:20, we were tired but still hopeful. Her blood work came back quickly, showing 32% neutrophils (or segs) and a white blood count of 10,000 (thus an ANC of 3,200). This is the highest it has ever been. Her platelet levels, as we had expected, was low, so she will be getting a transfusion today. The procedure was quick, and then the waiting for the results came. 12th South is full until this afternoon when they are releasing a patient, so we are still here in the clinic. There is a room with a bed that they use for long infusions back here. Dr. Lenarsky came back with preliminary results of the bone marrow from simply looking under the microscope. The news wasn't good. He said most definitely, he would not call this a remission. He still thought they were seeing about 20% leukemia, more than they would want. Well, 20% leukemia was wrong. The flow results just came back in--50% leukemia still left in her body. She has not been responding, despite all the positives we have been having, to the chemotherapy as they had hoped. So, the plan has changed. She will now be getting a higher dose (10x stronger than the dosage of the last round) of Ara-C and a new chemo drug that I can not remember. This will last only 6 days. It is a more aggressive form of chemo. No sense in doing the other plan because that was based on the fact that she was doing well with the first. After that, we aren't sure. We have to see what happens with the next bone marrow. For sure, she will eventually have to have a transplant. That is now a definite in her future. The treatment is harsh, but we have no other options. The only other option is to let her die, and we will not do that. If her body does not respond to this round, then we are in a bad state. As of now, Dr. Lenarsky says that he is still "hopeful." He says that if at some point that changes, he will tell us. As for me, I'm terrified. I don't want to admit it, but my hope diminished just a bit today. I had been so hopeful coming in today that we were going to see great results. I could just feel it. I feel crushed now. I'm sitting here typing in the hospital room as the two loves of my life are sleeping in the bed next to me. I am so afraid of losing her it hurts. Being her mother has been one of the greatest things to ever happen to me (that, and marrying Andrew). I can't imagine my life without her, and I don't want to. Next to the day that we found out about this, today has been one of the worst days. One of the emotional days. I just don't understand how a baby that was doing so well could now being doing so poorly. She is vomiting so badly that it is just stomach bile now. They are no contents of her stomach left for her to throw up, yet she still dry heaves. They gave her some anti-nausea medicine to help her stomach and make her sleep more peacefully. She looks so beautiful lying there next to Andrew. I am not going to post again today. Please say extra prayers for her. We will not know how her body responds to this round of chemo until the next bone marrow test in 28 days. During that time, she needs to stay strong and fight this disease. Thanks for your love and support, Jenny |
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