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Week 5 Sunday, June 6th-- 9:35pm--As great yesterday was, today was the exact opposite. Today was a miserable day. Allie had two modes today sleeping or screaming. Not one smile. The cries seemed like pain cries. The highest temperature she ran was 99.5, but we decided at 5pm to go ahead and have the doctor on call paged. Dr. Weinthal literally called us within three minutes. He said that it was most likely bone pain. As bone marrow produces new cells, it is common for leukemia patients to complain of bone pain. Common, okay, but still miserable. She has slept a lot today. Even more than what she did as a newborn. Sleeping is almost better though because when she is awake, she just cries and cries. Luckily, we are both home together. We have tag teamed taking care of her all day. One would hold her while she sleeps (because she will not allow you to put her down) while the other would do something else such as shower or eat. Made for a wonderful, fun afternoon. The thing that gets me was how good yesterday was. Today just hit us and brought us down off our comfort level. We got comfortable with looking at her and seeing her smile and be happy. We were reminded today just how much this disease sucks. I feel so helpless. As a mother, you hate to see your children hurt. As a mother of a sick child, it hurts you so badly. You want all the pain and discomfort that they are feeling to be placed on you instead. At least that way my sweet baby girl would not be hurting. I hate this! Tomorrow is a big day for us. We start out in the clinic in building D for her bone marrow biopsy and spinal tap. She will have to be put under with anethesia. Given the problem we had the last time, they are bringing in a specialist instead of doing it themselves. They just want to be extra cautious with her. The bone marrow sample will be sent to UT Southwestern for a test called flowcymtometry (don't know if I spelled that correctly). This test can separate the good cells and the leukemia cells and actually determine what percentage of leukemia she has. We are cautiously optimistic. Of course, we hope and pray for remission (meaning no leukemia), but we are also realistic. The goal of the doctors is to see less than 10% (she started with 100%). The first round is supposed to kill as much leukemia as possible while all the other rounds are to deal with the remaining. Same thing when you loose weight--the first 35 pounds come off quickly and the last 5 are the ones that you can spend months trying to get rid of. The results of the flow test will most likely not be in until late afternoon or Tues. morning. We will just have to wait patiently, if that is possible. The spinal tap is also important. They will be checking if there are leukemia cells in her spinal fluid. Leukemia likes to hide in the spinal fluid and the brain, so they are checking to make sure everything is okay. The last time they did the spinal tap, the results were negative, meaning no leukemia detected in the spinal fluid. After drawing fluid out for testing, they will inject a dose of chemotherapy into her spine. This will go up to coat her brain for protection. After both procedures are finished and Allie has woken up a bit, they will move us back "home" to 12th South. Funny thing, I have kind of missed it. I think Allie has missed it too. We missed the routine. At least there in the hospital, I had someone to talk to during the day. Here at home, I didn't have that, but it was more comfortable, of course. So, the plan is to be there for eight days so long as everything goes well. We are prayerful that results come back negative and she will handle the chemotherapy well. The upcoming weeks afterwards will be hard on her as her counts continue to drop and she becomes neutropenic again. Please pray for us,and take a minute to sign the guestbook if you can. We need some words of encouragement. Thanks. I am too tired to type anymore. Night, Jenny
Saturday, June 5th--Our five year wedding anniversary! 9:20pm--Allie has a new nickname--Tooter McGavin (if you saw Happy Gilmore, the joke makes more sense). The child passes more gas than some grown men. Doesn't seem to bother her, but man, she stinks at times! We are just sure that she has pooped, but oh no, just stinky toots! As you may be able to tell from the beginning of this post, today has been a great day. Allie has been a wonderful mood. She laughed and played all day. The only time she cried was when she needed to fall asleep. Yesterday is a distant memory. We had such a good time today with her. Both of our mothers babysat Allie for us this afternoon until about 6. We got to get out to the garage sale and have dinner at my favorite restaurant--Houstons. They have the BEST BBQ ribs. Yum!Allie spent that time getting doubly spoiled by Nana and Grandma, so she was content. That was the very best anniversary present we could have gotten. Andrew went to the garage sale early this morning to help set up. They filled the entire parking lot with stuff! He called me around 9 to say that the sale was going very well. They had made little buttons with various pictures of Allie on them and posted flyers on all the tables. As people paid, many just said to keep the change to donate to Allie. After my mom arrived at 2 this afternoon, Andrew and I went to the sale so that I could see it and personally thank the ladies. I was absolutely blown away! We visited with people for about an hour and a half. Mike and Angela even brought the boys up, so we were able to hang out all together for a while. The funniest part of our time there was when Joey dug through a box of toys and realized that some of the toys there for sale were his! He would pull out a toy and it would immediately register that the toy had belonged to him. Angela and I tried to contain our laughter, but it was impossible. In the end, the sale was extremely successful, raising more money than I could have imagined. All items that were not sold at the end of the day were donated to New Beginnings, a charity for women. We cannot thank Reunion Title, especially the people who worked all week to make this happen, enough. They sacrificed their day to help us. Andrew and I discussed the possibility of doing this again next year. Instead of saving the money for Allie's fund, we would love to be able to raise money for cancer, specifically childhood leukemia, research. To be able to give back something would be a good feeling. Today is our anniversary. Five years of marriage. We met as seniors in high school when we were 17 (he and I are only 12 days apart in age). Andrew and I went to different high schools, but he came to a play I was in because he knew someone in it. After the play, we met casually backstage (he had come back to hang out with our friend, Sonny). After that, we met at various places in large groups a few times in September. He was interested in me, and I was too oblivious to know it. Of course, as shy as Andrew was at that time, he wasn't exactly giving out any signals either. One day, Sonny told me that Andrew had asked for my number and was going to call me. My reaction was, "you mean the guy that never talks to me?" Yep, that was the guy. He called that night. When he asked me to dinner it was something to the effect of "If you're hungry, maybe you could go to dinner with me tomorrow night....but its okay if you say no?" Poor guy, how could I have said no to that? The date was great. He was such a kind and sweet person, and he opened up with me right away. We talked for a long time. We have been inseparable ever since. I fell in love with him instantly. I love his eyes (I was so excited that Allie got those same eyes!) I went to Tech for a semester without him, and then he came out in the Spring. During the summer and vacation times, he had his own room at my parents' house. My dad adored him, and my mom still swears he was the easiest out of all us kids to live with! I spent the summer of 1998 in France studying at the Sorbonne. The day after I returned, Andrew proposed. We were engaged for ten months, and we married on June 5, 1999. I can not ask for a better marriage. We rarely fight (maybe only a couple times in an entire year) and we normally don't fight for longer than ten or fifteen minutes. I think the main reason is because he is so laid back. If I mad and yell, it only makes me look like an idiot, so its not worth it! Some women may complain about their husbands not being helpful, but I can't. He cooks, helps with laundry, dishes, etc. I told him tonight that he makes me a better person. I couldn't ask for a better husband. Thank God we have each other to go through this. Without him, I would not be half as strong. He grounds me. If you are reading this, Andrew, I just want you to know that I love you with all my heart. You are the most amazing man I have ever met, and I thank God for every day that I get to spend with you. How thankful I am for you! Well, the baby is starting to fuss because she needs to get to sleep, so I better go help Andrew. We have only one more day at home. I hope that it would be as nice as it was today. That would be the perfect ending. I have created a new page tonight for interesting links. I encourage you to check them out to do a little research on your own about AML and childhood cancer. I also included some personal links. If you find any other sites you think are worthy of adding, please let us know. You will be able to access this link page off of the main site at any time. Love to everyone, Jenny
Friday, June 4th-- 10:30pm--What a day--phew! Allie woke up every hour crying in the night. I was up and down the entire night. So, that started us off on a bad note. Then, she was very unhappy today. I don't know what it was, but nothing was keeping her happy for longer than about two minutes. She would play for a minute than burst into tears (and she cries those big crocodile tears!). If I sat her up, she cried. If I put her down, she cried. Look at the mirror, played with toys, tried to eat, all with the same results--crying! By the time Andrew called to say he was coming home at 4:30 or so, I was crying too! Exhaustion and fussiness finally took its toll on me. I was heading towards that funk mood that took hold of me last week. I don't like that feeling. You feel such despair at those times and wonder as if it will all get better. Andrew came home to our rescue. She had taken a little tylenol, per Dr. Lenarsky, and was starting to feel a little better. By the time Andrew came in, she was all smiles for Daddy. I took a very needed two hour nap while the two of them spent some quality time and even watched Baby Einstein. I woke up to hearing her giggling at the TV while the puppy dogs (one looks like Brandy and she gets very excited to see it) were on the screen. We took the baby and Brandy for a walk around the neighborhood and then came home to play with her. No cries at all tonight. It was as if I had two different babies today. Allison Sutter, the mom I told you about in California whose daughter had survived AML, told me that sometimes its not day to day, but minute by minute. You can't expect all good days. Some, like today, have good and bad moments all together. In the end, though, the day ends on a good note because she is alive and with us. That is what we have to remind ourselves. Tomorrow is the benefit garage sale at the Garland office of Reunion Title (located at 12620 E. Northwest Hwy near the intersection of Northwest Hwy and LBJ Freeway. Andrew went by there this morning to drop off items from our house that we could sell and said the turnout of stuff is amazing! They have big items such as furniture and appliances, as well as small items too. They will also be having baked goods that can be purchased. I know that they placed an add in the paper for advertisement, but if you have a chance (and live in the area, of course, I know we have people reading from all over!), please stop there and help support us. From what Andrew was describing, there will be lots of stuff for you to purchase. I'm signing off now because I don't know when she will begin the screaming. Just thought I would end with this--I got a card in the mail (thanks, Terri Conn!) that says, "The last thing you need is one more person telling you to hang in there. So I'll just ask God to remind you how secure His hold is!" It was exactly what I needed to read today. It helped put things in perspective and remind me that God is here for us, even though sometimes I feel very alone. Love to you all, Jenny
Thursday, June 3rd-- 9:50pm--No transfusions needed. It was a successful doctor's appointment. Dr. Lenarsky was very pleased with how good she looked today. He didn't seemed too concerned about her screaming, just that it was kind of to be expected. He asked how we are sleeping. Andrew's sleeping better than me, but it still isn't too bad. By the evenings, I'm tired, but I am not going to complain too much. It could be much worse. The doctor's clinic is located in building D of the hospital. It is a beautiful and huge office. When you walk off the elevators, its as if you are stepping into an entire different facility. Mahogany wood, pretty pictures with bright colors, and a huge playroom with an oversized couch for kids to climb on. So much more personal than the sterile transplant unit. Allie looked adorable in her new outfit with matching hat and socks. The nurse thought she was adorable "from head to toe." Her white blood count is up to 5,400. Her red blood cells were at a good level and her platelets were a little lower, at 34,000. They don't transfuse, though, unless it is lower than 20,000. So, I expect that she will have one when we arrive on Monday. The only weird thing to me was that her segs dropped from 17% to 1%, now giving her an ANC of only 54. How does it drop from 680 to 54 in two days? I don't understand. They didn't seem concerned with this, but it did catch me off guard. I expected to be continuing on the up and up with her ANC. I thought it would be up past 1,000. Well, at least I had hoped it would be. Now, she is neutropenic again and very vulnerable to infection. Will this ever get better? Her fussiness started off this morning in full force. She was so gassy, but without any real results. At 8am, I tried to put her down for her normal morning nap, but she would not have it. She just fussed and cried. Then, finally, she pooped!! Wow, what a difference that made. Immediately, a smile came over her face and she was much more content. She didn't want to take a morning nap because she was too happy and playful. She just napped in the car on the way to the clinic and then took a really long nap this afternoon. To help keep off bacteria, we have to bathe her every night. Man, she has a lot of rolls! One thing she didn't forget about being home was her bath routine. Every time we set her in the bath, no matter if her diaper had been really full or if she had just gone to the bathroom, she pees. As soon as we set her little bottom in the tub, she feels the urge to go. So, I hold her (wet and naked, lots of fun for me) while Andrew quickly dumps out the tub and fills it again. Without fail, this is every time she takes a bath. sure enough, she peed in the tub tonight and last night. What a little turkey! No matter how much she fusses, it still feels good to be at home. Nice to be able to actually walk around the house with her without worrying about IV poles and lines. She knows where her catheter line is on her chest, so you do have to be careful about her not pulling. We try to make sure she always has something to hold on to while she is awake. You have to cause that distraction for her. She is consistently taking about three ounces now every three to four hours. We have decided to hold off on the rice cereal since that seems to be the cause of her gas and constipation. Tonight, she ate sweet potatoes peas. She literally ate every single bite. She only fussed when the spoon was away from her mouth! Only problem--she doesn't like the highchair. Since she started eating solids in the hospital, she didn't have a highchair. She simply ate on my lap. She will refuse to while strapped to the highchair. Once she got in my lap, she was much happier. Go figure. That's it for tonight. I'll end with some pictures. Hope you enjoy!
Wednesday, June 2nd-- 8:30pm--Allie has had happier days in the hospital than today. Not to say that she didn't have happy moments here, but she fussed more than she has in a while. The gas bothers her the most. Plus, as her bone marrow regenerates, it may be causing her pain--a common complaint of leukemia patients. Problem is that she can't expressed herself to tell me what she is feeling. She struggles to stay happy. Out of nowhere, she will begin crying. Right now, she is in her swing fairly content, but that doesn't that she won't become agitated in a few minutes. She's staring at Brandy on the couch. Its just unpredictable what will happen from one moment to the next. Scream fest 2004 took a bit of a break last night. She only cried at two and five in the morning. Life in the hospital became such a routine to her that she wakes up at the times that a night nurse checks her vital signs and draws blood work! Funny thing is, I have adjusted to hospital life too. I actually missed the interaction with the nurses today. Being at home is different when you can't go anywhere. I can't take her to the mall and walk around, can't have lunch with a friend, and I can't go to Angela's and hang out (what I really was wanting to do all day!) She went to bed well. Unlike the normal nightly battle in the hospital to get her to fall asleep, she went right to sleep. As soon as we put her in the crib, she closed her eyes and fell fast asleep. I ended up sleeping in the guest room after about 5 because I didn't know when I would be getting up again to take care of her. Her temperature went down in the night to 98 and has stayed there all day today. We go tomorrow for her blood work and check-up at 10:30. We don't know if it will include admittance for a blood transfusion too. I wouldn't be surprised though. Hopefully, her counts will be stable and she will be looking good to them. My plan is to dress her up in her new cute outfit (yellow romper with watermelons) and take her up to visit the nurses on 12th South. They need to see her looking cute without her gown and lines all hooked up. I'm tired tonight, so I think I will keep this short. Here are some new pictures. Really hard to realize at times that she is still a sick baby. She looks great! Night, Jenny
Tuesday, June 1st-- 9:00pm--I'm exhausted. After finishing my post last night, I finally got into bed at about 1am. Unfortunately, that is when Allie chose to begin her nightly scream fest. She cried every thirty minutes the WHOLE night! Well, I take that back--she did sleep from 4-5 without waking up. I would get up, comfort her a bit, then go back to sleep. By the morning, I was so tired. Her blood results were the best they have ever looked. Yesterday, she had 1% segs and an ANC of 31. This morning, she had 17% segs and an ANC of 680! It was as if her body knew that we were being released today and she had to be feeling well. I couldn't believe it when I saw the morning print out. Of course, things can change, but that was the best news we could have had this morning. Getting ourselves check-out took no time. Dr. Goldman came to talk with us at 9, and we were out the door by 10:30. What took the most time was packing up the excessive amount of stuff we have collected in the four weeks we were there. It happened so quickly. Cindy, our nurse, walked us to the elevator, and we just walked out of the hospital with Allison. Just like that. We packed her in her new carseat (she outgrew the baby carrier, so now she is riding along in a big girl one). riding home with the three of us all together was indescribable. It was so easy to forget everything that has happened in the past month. Dana Eisenberg had warned me that being at home gives you a false sense of security. You forget that you have a sick child when you are holding her in a normal environment. You slip back into normalcy so easily. She napped on my bed with me. Right now, she is playing with Andrew while I am typing. They look so great together on the couch. However, I am very guarded. Her temperature is 99.8, so I am worried about it going up any further. If it does, we head back to the hospital. I have a feeling like we won't be here at home all week. I am just waiting for the moment that we pack up and head back to the hospital. Just a feeling. She has been fighting fussiness today. This was a big change for her. As excited as we are to be home, we don't know exactly how she is reacting. She will be sitting quietly and smiling, then she will begin to cry out of nowhere. Sometimes, she laughs and cries and the same time as if she can't separate the two. So, she is struggling a bit, but we are hoping that she will settle in to home life tomorrow. Don't know what the night will bring us. I may end up sleeping in the guest room since it is right across from her room. That way, I may not have to cross the house as many times. I'll be sure to nap when she naps tomorrow. We have a home care nurse coming tomorrow to bring med supplies and teach me how to flush her catheter lines with heparin and bring supplies to do her dressing changes. Are appointment for blood work is now set for Thursday and we are set for her bone marrow biopsy and spinal tap for Monday. Thank you all for your love and support. Thank you for abundance of prayers and well wishes that you send our way. I wish there is more I could do to thank you. I have a stack of thank you notes, but it seems like a monumental task. I don't know how I will get them done, or if I will get them done. Please continue to pray for us. Pray that Allie does well over the next few days and we are able to enjoy our time here as a family to its fullest. All our love, Jenny, Andrew, and Allie
Monday, May 31st-- 11:15pm--Last night here! Well, that is, so long as there are no complications. Dr. Lenarsky says you don't know for sure that you are leaving until you pull away from the parking lot. Then, of course, you could be back up if anything goes wrong at anytime. Our prayer is that she will be alright at home and we will only have to come up Friday for her check-up (though the check-up could be a half of a day procedure if it includes a transfusion of some kind). Today was a great day. I woke up to the dog at my side and Andrew telling me it was time to go to the hospital. When we arrived, Allie was on the floor doing tummy time with Jacob, her physical therapist. Jacob says that she is doing really well. It's amazing. When you think of a sick baby, you think of someone lying in a hospital bed unable to move much. Not the case. Even in the hospital, she is thriving. Since being here, she started sitting up, "talking," laughing out loud, eating rice cereal, and we even started veggies this week too! Dr. Lenarsky says that it isn't uncommon for young children who are hospitalized to meet their milestones quicker than others because they are so stimulated here. She has more than just her parents to help her work on her development, including trained professionals like Jacob. I told someone that when all this is over, it could very well be the best experience of our lives--could also be the worst, but I try to see it positively. Being here, we are meeting people that will impact the rest of my life. I told Dr. Lenarsky today that the people here are some of the best people I never wanted to meet! But, now that we are apart of this club, I'm glad I know them. Take the Eisenbergs for example--they are going through the same situation as us. In my opinion, they have even more on their plate because they also have to worry about Sam's twin brother, Ethan (they look so adorable in the new pictures, Dana! What gorgeous boys!). Yet, with all their are going through in their lives, what are they doing? Trying to help raise money for us to get an opportunity to have Allie photographed. There is a famous photographer, Katy T. something, can't remember, that takes beautiful pictures of sick children. There is a link to her site on Sam's website www.caringbridge.org/tx/sameisenberg. The Eisenbergs are flying her in from Denver, Colorado to take pictures of them and Sam. She knows that Andrew and I can't afford this. So, they have sent an e-mail to their friends asking for them to help us have this opportunity for Allie too. Can you believe that? What an awesome family. Tomorrow will be bittersweet. We are heading home, but I am also doing something I never thought I would have to do. I have two forms to be faxed in the morning--one is a resignation letter and the other is a separation from employment form. That's right, I am resigning my job as a teacher for next year. These were not words I expected to write any time soon. I always saw myself as the teacher that twenty years from now, someone would say, "She's still there?" You know, we've all had those teachers. If someone had told me that I was going to be a stay at home mom, I would have laughed at them. Even after Allie was born, I didn't intend to stay home. We had the ideal care situation for her--our closest family friends. Allison wasn't so much a person Angela took care of, she was like a niece or another child. Josh and Joey were like brothers or cousins. I never worried when Allie was with her because I knew she was well taken care of. Sure, I cried the first day I drove away from her to head to work, but that was it. But, with all that is going on, it is impossible for me to work. Debbie and I looked at my options for hours one night, I talked extensively with Andrew, and I listed my pros and cons. Angela wouldn't be able to be her caregiver next year. Allie can't be exposed to germs. With two children in school--Josh in preschool and Joey starting kindergarten!--it isn't feasible to think she could shelter Allie from germs. The cost of private care out of our home would be almost if not more than half my paycheck. So, essentially, I would be working to pay for Allie's babysitting. Not to mention the stress of planning for subs when I would be out with her, the worry and guilt of leaving her, and the excessive amount of time off I would need. When it all boiled down to it, it didn't make sense for me to try to work. Allie needs me too much. I called my school last week and explained this very thing to Gail Stelter, my vice principal. She was extremely supportive and understanding. She knew I was making the right decision for my family. It's just a hard decision to make. I love that job (and we need the money), but then again, I love that little one even more. My goal would be to try to tutor in the evenings when Andrew can be with Allie. Jasper kids--if you need a French tutor, e-mail me!! So, Rice will begin looking for a new French teacher. I think they have someone at Rice who will take over PAL. It will definitely someone great because they know how important that program is. The hardest part of this will be packing up my classroom. I will probably have a few ex-students help me pack it all up. There are a lot of items there that will go with me and some that will stay at Rice. I want to make sure I leave things in order for the new person. I take too much pride in my work, and especially my students, not to. I will miss the daily interaction with students. I will miss the laughter in my room. It's scary to think that I am closing a chapter in my life. Rice has been so good to me in the last four years. The teachers there are some of the best in the district--I'm convinced of that. I have met some incredible kids that I will never forget. Look at all the ones who sign my guestbook? Apparently, I did something right. I love to have them come back to visit me when they have gone to high school. Its the ones that keep coming back to visit or that have moved away but keep e-mailing (thanks, Kyle!) that mean a lot. Every year, I could list off a large list of kids that made teaching worth while. Sure, the paperwork and grading stink at times, but all in all, it is so fulfilling for me. Wow, I have been typing for thirty minutes. Sometimes it seems as if I just throw something together in ten minutes for my post, and other times I spend quite a lot of time. I think I am just excited about tomorrow's adventure home. Please pray for positive blood work, no transfusions, and an uneventful week home. I love the nurses here on 12th South, but I don't want to see them (except for the social visit on Friday) until next week! Since I promised pictures, I can't go back on it. Allie had us laughing so hard tonight. She is sticking her tongue out now and curling it towards her nose. So, the first picture, Andrew so kindly captured me doing it back at her. That's okay, that's why I had to include the picture of him asleep! Have a wonderful Tuesday--let's hope that Allie will too! Love, Jenny
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