Journal History
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Tuesday, September 6, 2005 10:37 AM CDT
It's been awhile, sorry. There'll be an update in a few days.
Friday, January 28, 2005 10:49 AM CST
Okay, so a couple of days means a couple of weeks for me. BIG news: Hannah and Madeline have just passed their two year mark from their bone marrow transplant. YAHOO!!! We got word the other day that we may be hearing from the donor very soon, I can't wait to converse with the person that saved their lives.
As you can see from the picture above, the girls have lost some teeth. The tooth fairy has been very nice to my little jack-o-lanterns. Hannah thinks that the tooth fairy collects all the teeth and makes a dress out of them.
The twins are doing great in their first grade classes. I'm almost positive I wasn't learning at the same level they are when I was in the first grade, it seems very advanced. They each have boys that they like in their class rooms.
Medically speaking, the girls are doing great. Hannah still has to get IVIG every so often, and is still on three medicines. They've only had a couple of colds/stomache bugs this winter, nothing major.
Ethan is doing very well. After some tears and a couple of days, I finally got him potty trained. He is now fluent in the bathroom. He attends a weekly art class where he makes cool crafts and learns of famous artists techniques. He actually mimics some of the techniques when he doodles at home.
Abigail is talking so much now. She is the only one our kids that opts to play with dolls and babies. It's so cute to watch her be mother to her dolls. She still gets blood work done every so often, with no new news.
Last week we got pounded with 14 inches of snow. It took about a half hour to get the kids dressed to play in the snow, and they only played for about 15 minutes. Then it took another 20 minutes to get them all undressed. All of the snow gear takes up almost half our living room. I'm ready for winter to be over, and it's only half way over.
I'll put a short attachment to this update once we hear from the donor.
Thanks for the continued well wishes. Even when it seems that this site is dormant, I still read the guest book weekly.
Wednesday, January 12, 2005 7:33 AM CST
A new update is brewing. I promise it won't be more than a couple of days.
Tuesday, September 28, 2004 7:28 PM CDT
Rip Van Winkle here. I must’ve dosed off and, hey, my tea has evaporated! The children are all grown and my Depends need a changing. Yes, yes, silly Uncle Greg is absolutely hysterical with his mock update. Now on to the real update.
I last left you in March with Abigail’s first birthday. Hannah and Madeline turned six in the middle of March. Ethan turned three in July. Now all of the birthdays are out of the way.
April was exciting because we moved into our new house that has plenty of room for all of the toys. We all have our own room now, yippee. Unfortunately Stacie and I still wake up with children lying next to us in bed.
May was awesome, as it was Madeline’s Make-A-Wish trip to Bermuda. The trip started with almost missing the flight , a slightly nerve racking beginning. The hotel was fantastic, the best on the island. As I’ve written before, Madeline loves the British tongue and tea. It just so happens that this hotel offers one of the top ten rated tea times in the entire world. Everyday started with a gourmet breakfast, followed by a, not-so-cheap, taxi ride to a local beach. The water was just below perfect, but the weather couldn’t have been better. It didn’t rain once, and it seemed like the temperature never teetered from 75 degrees. We had traditional afternoon tea several times, sparking Stacie to make great scones at home. Dinner was phenomenal every evening. Almost every evening, we finished with room service dessert and tea. Just before bed the Hannah and Madeline took a dip in the, way too cold for me, salt water pool. If you’ve seen or heard of the movie Groundhog Day, you’ll appreciate this. Everyday was the same, with only small changes to tweak the day. It was great. Now for all the little things that changed daily. We took a glass bottom boat ride out to the reefs and to a shipwreck. Abigail wound up with a bad ear infection and had to see an 85 year old physician, quite an experience. During harbor nights, a celebration for all the visitors of the island, all of the kids got their faces painted and enjoyed kid rides. On a day trip to Dockyard, Hannah and Madeline got to feed and touch a dolphin. While there, we picked up some traditional rum cake. Now for some danger and crocodile hunter-like half truths. On one of our beach trips, I was photographing a Man of War jellyfish that was floating by. I had to walk out on slippery coral ledge to capture the picture. On my return to the beach, my camera and I decided to take a dip. Instantly the camera fried, but I was able to save the fifty or so shots on the digital card, including the picture of the deadly creature. Now here’s how I hope the urban legend of the photographer-hungry jellyfish really gets heard: On his latest journey in the dangerous waters off of Bermuda, world renowned nature photographer, Benjamin Ritter, was nearly dragged into the abyss by a ferocious man eating jellyfish. As the venomous tentacles lassoed around the ill fated photographers ankle, his quick wit enabled him to break free, only to suffer the lasting scar of the stinging appendage. Back to reality. I do have a scar, but it’s from the fall on the coral. Madeline got a luxurious massage one of the days. We really didn’t want to come home, but we did. After coming home we’ve had several afternoon teas that rival the one’s we had in Bermuda. Stacie has mastered the art of baking a superb rum cake and mango scones.
June, July, and August were a hot blur.
September has brought the return of school. Hannah and Madeline have begun first grade and love it. They have homework every night.
All of the girls had an oncology visit today. Madeline and Hannah’s blood numbers are great. Madeline is still off all med’s and Hannah is now down to only three. Madeline has started the reimmunization process and Hannah will soon follow. Abigail has shown low platelets, and will be closely followed by regular check-ups.
There is the update in a nut shell. I won’t make a promise on the next update, only that there will be one. Have a great day and wonderful next couple of months.
Wednesday, June 30, 2004 7:02 PM CDT
An update is brewing. It shouldn't take long to steep.
Friday, March 5, 2004 8:22 PM CST
Now, when I said I would update in a few days, I really meant a couple of weeks. It's only been five months since the last update.
Today was Abigail's first birthday and Stacie has just made one of the most beautiful cakes for her party tomorrow. She's standing on her own but not yet walking. She has started to get her molars in and is incredibly cranky about cutting the teeth, yet still manages to smile at everything. Back in January Abigail had an allergic reaction to Amoxicillan and broke out in hives. The day after the initial breakout, the hives turned to bruises and she was rushed down to CHOP in fear that her platelets were low. Fortunately, it was just a bad reaction to the antibiotic and nothing was wrong with her blood.
Ethan is the most handsome boy I know, but I am slightly biased. I love the fact that he can now vocalize all of his wants. He refers to himself in the third person all of the time, much like Bob Dole does. He is a Philadelphia Eagles fan, which is something that his Beepa is happy about. He runs around screaming "GO EAGLES!", even on the off season, now how's that for a diehard fan.
Now onto the two girls that are the reason for this website. They both hit their one year after transplant back in January. I can't be more thankful to the doctors and nurses and especially the person that donated the healthy stem cells that is keeping them well. We now have the opportunity to correspond with this person and will start the process of paperwork soon. Although they are both identical and got the same stem cells, they are both at different stages in their progress.
Madeline hit her one year and was completely taken off medicine. This was odd for the first few days, given she was on something every single day for the past year and a half. She is loving school and is learning so much from it. At the end of last year she was interviewed for her Make-A-Wish trip and she wanted to be in England in a pink hotel. What she really likes is the english accent. So the nice people at Make-A-Wish have arranged for us to fly off to Bermuda and to stay in a pink hotel appropriately named The Princess. Madeline will be surrounded by the British tongue and she'll enjoy tea time daily in May for a week.
Hannah is still having an issue with the skin GVHD. She was on cyclosporin for so long that the hair on her arms is about an inch long. Recently she was switched to a different antirejection drug, Prograf, which won't produce the unwanted hair growth. She's still on prednisone and six other medications and doesn't think that it's fair that Madeline is medicine free. None of it is fair. The medicine's have stunted her growth immensely, to the point that they almost don't look like twins. Next week they both have another IVIG infusion and it's possible that Hannah may be weaned off of some of the drugs. Hannah is also loving school. I'm amazed at the things that they're being taught and what they comprehend.
Both Hannah and Madeline don't like it when I leave for work. One night, while being tucked in, Madeline said, "I want to pretend that I'm your boss and fire you so you can go home with your kids". She questioned herself and said, "what's fired?". Hannah chimed in, "No Madeline, you mean retired".
Hannah and Madeline turn six years old in two weeks and I can't believe where the time has gone. This will be the first year that they're having a party with classmates. Stacie is going to set up a tea party theme for them and I'm sure make another fabulous cake.
I'm officially an Uncle Ben now. My gorgeous nephew, Leif, was born to two of the most deserving parents last week. Leif's Daddy and Mommy are the key kick-in-my-butt to getting this update finally on the web, so thank them. Congratulations on your family Silly Uncle Greg, Aunt Kristine and hairy K9 brother Aspen.
Both Hannah and Madeline have crushes on boys in their classes. They talk about weddings and having inlaws, funny stuff. One of our friends is going to have both of them as flower girls in her wedding this fall, they're going to love it.
That's about it for now. I promise more frequent updates in the future.
Hug and love your family, they're worth it.
Friday, February 20, 2004 6:27 PM CST
Alright already, a new update will follow in the next few days.
Sunday, October 19, 2003 8:41 PM CDT
Seems like the time in between each update gets longer and longer. We've been very busy with work, school, medical stuff, home life, and trying to fit fun into our lives where we can.
Medical stuff:
Hannah's graft versus host disease is now covering over half of her skin, from her neck to her knees. It causes her skin to have a very uneven looking tan and ridges in her finger and toe nails. She is part of a trial for a drug, but may be on the placebo. She started cyclosporin and steroids again about a month ago which have caused her face to become rounded with dark hair growth, intolerable mood swings, but have also given her a welcomed appetite gain. As a result of these two medicines, she has to be on a blood pressure medicine, an extra antibiotic, and magnesium because the cyclosporin depletes the body of it. This brings her back up to eight drugs, with none of them being thrown-up yet. On one of the hospital visits, the radio station Oldies 98.1 was broadcasting live and Hannah and I were interviewed. The first thing Hannah said when the microphone was handed to her was, "Is this the news". She then recited the Pledge of Allegiance on air, which was really cool.
Aside from Madeline's IGG level being low, requiring transfusions once a month of IVIG, everything is going great with her. Hannah also needs these transfusions. Both girls are still 100 percent donor cells!!!
Stacie had her oncology consultation earlier this week and will probably have a bone marrow biopsy done in January. As for Stacie's mom, I'm not sure what's going on. Her mom definitely has MDS, with the only possible cure being a bone marrow transplant. Last minute, her mom's doctor decided not to do a biopsy and has put her on Procrit, which to my knowledge is just a Band-Aid. I feel she needs a second opinion. Stacie's cousin had a bone marrow biopsy done last week with results expected some time this week. Stacie's doctor told her that there are only about six known families to have a familial link to this type of gene mutation, aren't we lucky. When will it end?
Unmedical (I know it's not a word) stuff:
Both Hannah and Madeline have learned to tie their own shoes in school and they sing a cute ditty while doing it, bye-bye Velcro. They are both loving school so much and Madeline has a crush on one of the boys in her class. I shouldn't say it, but the girls haven't come home with any illnesses yet. As a precaution, all six of us got the flu shot.
I love the words that the girls make up. Madeline shortened the words 'tomorrow morning' to "tomorning". When she said it, it made sense to both of us, and then we both laughed.
Hannah has officially gotten her tickle back. For the longest time, one or more of the medicines that she was on was hindering her sense of touch. I realized she got it back when I went to dry her off after a bath and she could barely stand up because it tickled so much.
Abigail now has eight teeth and can sit without falling over. Just the other day she held onto something and stood for a few minutes.
Ethan is talking a ton more and passed his last hearing test. He now requires a hug and kiss from me every morning before I leave for work. Without being prompted, he says, "love you". Although he doesn't get along with his older sisters all of the time (most of the time), he is always looking out for Abigail, showering her with hugs and kisses constantly.
The ultra fun Make-A-Wish trip to Florida:
At the end of last month, Hannah's wish to go to Disney was fulfilled. It started with a stretch limo ride to the airport. Then an amazingly, or shockingly, calm flight down to Orlando. It was going great until we got the news that a thunderstorm was going to delay the removal of our baggage from the airplane. We thought maybe ten minutes or so, try three hours. Every time it thundered meant at least another 20 minutes. We finally made it to the Give Kids the World Village, just outside of the theme parks.
It was Christmas the first night we were there. Complete with a sit on Santa's lap, followed by a present, and then a run through the fake snow making machine outside. We finished out the night with a trip to the ice cream parlor that is open from 7am to 9pm. That's right, ice cream for breakfast anyone?
The next three days were spent at the Disney parks. We did everything that the girls wanted to. Hannah wore a special pin that indicated that she was on a wish. We didn't have to wait in any lines for anything, we were treated like royalty at certain times. We met up with some of our relatives who live in Florida each of the days and it was great to see them. Almost all of our meals were with Disney characters, which kept their attentions so that Stacie and I could cram some nutrition into ourselves. The girls wore cute princess costumes to two of the meals. We went to a real Luau at one of the resorts and ate the best ribs that I've ever had before. Ethan loves all of the Disney characters on T.V., but to see them in person was a bit much for him. He was afraid of just about all of them. What interested him was anything dealing with water, the puddles that he splashed in could have kept him busy all day. At the end of everyday, we would return to our room and find a small present for each of our children.
We spent the last two days at Universal Studios and got the same royalty treatment. We ate at Emeril's restaurant for one of the lunches. I've never seen filet mignon on a kids menu before, but Madeline and Hannah sure enjoyed it. We also ate at Green Eggs & Ham inside Suessland.
One of the last nights, there was a pool party for all of the families. It was great to see the other children laughing and playing, knowing that this was their wish too. Nickelodeon came to the Village on the last night and did a mini version of one of their shows, Slimetime Live. There were camera men everywhere and Hannah got slimed, she said it tasted like applesauce.
The morning that we left, Hannah and Madeline both rode a pony and a horse while in the Village. The journey home was long, with Ethan screaming through most of the flight. The only upside is that we knew there was a limo waiting to chauffeur us home.
The Give Kids the World Village is an amazing place and I don't think that there's enough that I could say about it. The man who started it, Henri Landwirth, is a Holocaust survivor that came to America with twenty dollars in his pocket. If you have the time, do a search on his name and read about what a beautiful and inspirational person he is.
We took almost 300 useable pictures while on our trip, so I might rotate the pictures weekly even though there won't be an update. Our children had an immeasurable amount of fun on the trip, it was everything I thought it would be and then some. Madeline will be getting her interview for her wish soon and I already know that she'll have the same wish as Hannah, she's already been hinting at it.
The first day while we were still in Philly, we heard from a passersby, "Boy, you've got your hands full", in reference to our family of six. We thought it would be fun to count the number of times we heard that exact quote while on the trip. I stopped counting at 40.
Friday, September 12, 2003 8:20 PM CDT
Slightly longer than a month has passed and there's much to write about, mostly very happy stuff, but some on the complete opposite end, bordering unbelievable to the point that it seems like we live in fictitious horror movie.
Hannah and Madeline's blood is still doing great and I'm very thankful for that. Hannah's IGG level came up above the acceptable level and this means no more infusions, for the time being anyway. The girls have been fever free for over seven months now. Hannah weighs 27 pounds, which is one pound down from last month and it concerns me. Madeline is up to 32.5 pounds and seems to be consistent with her weight gain. Another concern about Hannah is that her skin graft-versus-host-disease fades then comes back. They all have blood work next week, including Abigail on this visit.
Abigail has five teeth and loves green beans and peas. She didn't much care for her first taste of fruit, but finishes jar after jar now. On two separate evenings, she had three low heart rates and three apneas that her monitor alarmed for. We're not sure why the alarms are happening, but I imagine she'll be hooked up for a few more months just to be safe. She smiles at absolutely anything and I love it.
Ethan is doing great and saying so many new things. He copies everything that the girls do, and has learned a lot from them. He says "up and dumb" for 'up and down'. He has another hearing test next week that I'm sure will be inconclusive again due to the troubles of trying to keep earphones on a two year old.
We've decided on giving up on goldfish, as we've sent enough of them to fishy heaven. The girls didn't know that we lost Vanillope twice, but our friend Victoria did wonder how the fish got smaller from one day to the next.
The girls got their first haircuts since transplant at a salon. While one was getting done, the other was getting a manicure. Their hair is almost long enough to have a style.
YAHOO!!, Hannah and Madeline have started kindergarten, something we feared wouldn't have come true at some of the lower times this past year. Stacie and I were allowed to go the first day to meet their teachers. They have been split up which I think will be a good thing for the both of them. It only took an hour for Hannah to be called a boy because of her short hair. Stacie explained to the boys why she had short hair and hopefully it won't happen again. The girls love to ride the bus, but I have mixed feelings about it. For the first three days, Stacie followed the bus to school and watched the kids walk into school. Madeline found this out and said, "Mommy, don't follow the bus, you're annoying the bus". One of their friends, Victoria, who is in the second grade, helps them both off the bus with their oversized backpacks. I love their school and they seem to be learning. Hannah can actually recite the Pledge of Allegiance by herself.
Whenever Hannah introduces herself, she spells her name, then says, "that's two H's, two A's, and two N's", (very funny). One night at bedtime, she got the giggles and every time it got quiet, one of us would start laughing and cause a domino effect of giggling. It lasted for 15 minutes until our bellies started hurting. I asked Hannah what she learned at school one day, and she replied, "what did you learn at work today".
Madeline claimed that she didn't want her hair to grow long. Her fear was that if it were long again, it would make her sick, like before transplant. She seems very concerned about her health. A few nights ago, she said, "I don't want to die". I asked why she worries about that and she responded, "I don't want to go to heaven, I won't be with you". I hate that my five year old feels as if she needs to worry about death.
During a very violent thunderstorm, a bolt of lightning struck extremely close to our house and Madeline said that the storm took a picture of us.(because of the flash)
After dinner one night, Madeline asked for a "hot FUDGE sundae". She immediately covered her mouth and said that she had said a bad word. She then whispered her request for the dessert. She remembered the movie, A Christmas Story, in which the boy said "fudge" and the reaction he got from his parents from saying it.
Everyday that I leave the house, Madeline has to be the last one to give me kiss. If Ethan or Hannah sneak in a kiss after hers, she won't let me go until she plants another one on me.
A highlight for me this month was a day that just seemed perfect. The kids had a blast in our little pool out front, with everyone laughing while splashing and spitting water at one another. Ethan refused to wear a suit, so we let him be 'nature boy' all afternoon. We caught butterflies and Madeline managed to actually lasso one herself. The proud look on her face was enough to make me want to cry. At one point Madeline let a ladybug crawl all over her as she said, "she loves me, she's giving me hugs and tickles". Hannah didn't want to touch the butterflies, but really wanted to catch one. It seemed that the butterflies all got the word that they were prey for the day and they all vanished. Madeline then pretended to be a butterfly and Hannah ran after her and she finally caught her first winged beauty. Abigail just laughed and smiled all day. This was a day that I could live over and over again. Why can't they all be like this?
Two weeks ago, Stacie received a devastating call from her mother's doctor down in Florida. Her mother has the same cancer that Hannah and Madeline have and she'll require a bone marrow transplant very soon. Her doctor feels as if the cancer has already progressed to AML, and a bone marrow biopsy scheduled for next week will confirm it. All of her mother's siblings are being HLA typed to see if one of them is a possible donor. Stacie's uncle and cousin possess many of the same traits linked to this particular cancer and are in the process of being tested. The thought is now that Stacie's grandmother and her grandmother's brother died of the same type of leukemia, the technology and knowledge of cancer didn't exist back when they passed. Our fears of this cancer are compounded by the fact that Stacie has low platelets and Abigail was born with low platelets. Stacie has an Oncology visit next month that will hopefully give us some answers.
With this incredibly bad news, our lives will once again be in a hellish turmoil. Our thoughts are all over the place with tensions very high. I was almost to a comfortable level with Hannah and Madeline and now I lie awake many hours of the night just worrying about the future. This was supposed to be a happy time, but now its' been tarnished by cancer, the same cancer. How can this be happening? It stinks when you almost see the light at the end of the tunnel and realize that the light was just a lantern running low on oil.
Please keep our family in your thoughts and prayers.
Tuesday, August 5, 2003 7:24 PM CDT
I thought today would be a great day to do my monthly update, Hannah and Madeline are on DAY 200 from their transplant. Yahoo!!
The second blood test has confirmed that they still have 100 percent donor cells. All of their blood counts look great and they continue to be free of any illnesses. Hannah has only one more infusion of IVIG next week and I know that she'll be excited not to be hooked up to a pole on a monthly basis. While at the last clinic visit, Hannah started to act up and I told her to "take a chill pill". She responded with "I left them at home". So I pulled an invisible pill from my pocket and told her to take it, she then ran to the garbage can and threw it out. This was great for a laugh and it made her 'chill'. The girls are still nearly two inches different in height and I'm moderately concerned about Hannah's growth. They both are gaining weight at an acceptable level with Madeline weighing 33 pounds and Hannah 28 pounds.
Abigail is doing great and smiles at everything. She has done so many firsts in the past month: ate cereal for the first time, first tooth and then a second tooth a day later, grabbing feet for the first time, and finally sleeping in her own crib for the first time. She's growing up so fast and I just want her to stay a baby forever, since she's the last one. And yes, a doctor has confirmed it, she is definitely the last one. Her baby hair is falling out and Madeline asked if it was falling out because she had sick blood. After an explanation, it made sense. The baby pictures of Hannah look just like Abigail, right down to the squint of one eye when they smile.
Ethan turned two at the end of last month and it was celebrated with everything being SpongeBob. He now expresses concern when I'm not at home and can put four words together, "where did Daddy go?". He'll repeat it until he gets to talk to me while I'm at work. He flirts with the potty but won't sit on throne, I think he's afraid that he'll fall in. He had another hearing test last week that was inconclusive, but they don't seem to think anything is wrong. He really made a great leap forward on his speech and vocabulary this month.
With the girls still in remission, we decided to throw a Luau in celebration of them being cancer free. There were Pina Coladas, Rum Punch, and Margaritas,(only for the adults of course), all complete with tiny umbellas that speared festive fruit. I managed to compile five hours of tropical music on my computer to echo through the party. It was great for family and friends to see the girls, and Stacie and I for that matter, since we too, have been isolated for so long. We finished off the night with one of my friends twirling, eating, and blowing fire. Aside from a small vacant spot in the grass, it all went well.
Great news: Silly Uncle Greg and Aunt Kristine are expecting early next year. Silly Aspen will have a brother or sister and my kids will have a cousin. After many childhood years of being teased with being called "Uncle Ben" (as in the San Francisco treat), I now will be able to enjoy the benefits of such a name. Congratulations!!!
Our goldfish of four years, that had been swimming and laying on its' back for the past three years, finally said farewell last week. Without ever having to deal with the loss of one of their pets, at their aware age anyway, Stacie and I weren't sure what to say to the girls. Thanks to some advice from our friend Lisa, we discovered fishy heaven. We all said something nice about Dorthy before flushing her to fishy heaven. Fishy heaven, in case you didn't know, isn't where the sewage goes. There's a spot at which the pipes below separate, one goes to fishy heaven, the other to the treatment plant. After the ceremony, Madeline asked why she died and I explained that she was old. She then asked if Dorthy had "a cane" in heaven to help her swim. Hannah seemed to be more emotional about the loss. With her hands to her chest and eyes filled with tears, she said, "I can't see Dorthy, but she's in my heart". We agreed that she needed to be replaced, so off to the pet store we went. The fish names were picked before we got there, Vanillope and Chocolate. Vanillope likes vanilla by the way. Respectively, we wound up with a white and black fish. After seeing catfish at the store, Madeline innocently asked if Hannah was allergic to them, since she has bad allergies to cats.
I love how Hannah and Madeline can animate an inanimate object without thinking twice. After gasing up the car the other day, Hannah asked the car if it liked its breakfast of gas. They constantly give everyday items different personalities that seem to fit. Their imaginations never cease to amaze me.
The nice people at the Make-A-Wish Foundation have granted each of the girls a separate wish. Hannah's was to go to Disneyworld, and with a twinkle of their nose and a quick nod of their head, her wish was granted and will be fulfilled this Fall. Madeline's original wish was to fly to England and meet Harry Potter, well, the actor anyway. Wishes that require a passport aren't given, so Madeline will have a second interview after the Disney trip. I keep telling her that Nicole Kidman is really cool and that she speaks with a British tongue, but I think that would be my wish.
With Hannah and Madeline in remission, and so many children that I have met that aren't as fortunate, I can't help but to carry the heavy burden of survivor's guilt. How could I be so blessed to have two children endure a trip to hell and back, while some families have their ONE child taken by cancer. I wish that there was an easy remedy to the way that I'm feeling, but there isn't. I often visit the Caringbridge pages of those that have passed, and attempt to write words of sympathy and encouragement, but I know that there's nothing that can be said to make it better, and I'm afraid coming from me that it wouldn't come out right. Going through this sure has given me a greater appreciation for what I do have. What Hannah and Madeline braved was BIG stuff, everything else in our lives is little stuff. I've read the book, but it wasn't until BIG stuff was in my face, that I truely learned the meaning of 'don't sweat the small stuff'.
Sunday, July 6, 2003 12:25 AM CDT
New pictures have been added. It only took about 20 tries to get the picture of all four on the front page.
I didn't forget about the web page, but I'm happy to report that there's not much to report about. From now on I'll probably update only once a month unless there's truely anything other than 'normal life' to report. I do check the guestbook entries and do read the ones to the girls that are meant for them.
It was a year ago, July 3rd, that the girls had their first bone marrow biopsy that indicated that they had cancer. It feels like yesterday. That's when I really started indepth journal writing and photographing of all of their medical happenings and mishappenings. I included a picture from the morning of their biopsy, they look so different with a full head of hair.
Abigail, Hannah, and Madeline had blood counts done last week and everything looks good. Abigails platelet count came up to 175,000 from 150,000 two months ago. Hannah and Madeline had extra blood taken to recheck the percentage of donor cells. Results will hopefully be in at the end of this week. Hannah shocked me this time and didn't shed even one tear when she was stuck by the needle.
Ethan continues to learn new words everyday and is incredibly polite with his "thank you's" when he's given something. We have a small issue with the possiblity of his ear canals being too narrow, causing his hearing to be slightly impaired, which would also help to explain certain unclear vocalizations. He has more tests scheduled for the end of this month.
Going back to work has been a big change for the girls. The first morning that I left before they woke was particularly hard on Madeline. She now insists on hugs and kisses every morning at the front door. The first night that I wasn't home to put them to bed was even more difficult with many tears. One morning, Madeline told Stacie that she missed me because she smelled me on the pillow.
We would love to take the kids to the beach for the day, but the girls skin is too sensitive. They won't be allowed to go in a public pool until next year, for fear of infection. To keep cool and entertained, we all play out in the sprinkler late in the day, after the sun has lost some of its intensity.
Try to stay cool and I'll update if anything happens or if the blood results come back as abnormal.
Tuesday, June 10, 2003 10:50 PM CDT
New pictures have been added.
My apologies for a long awaited update. With my return to work, getting to the computer while I am at home is of low priority. I prefer to spend the time with my family and to try and catch up on some much needed sleep here and there.
Hannah and Madeline's blood work has come back fine everytime it is taken and soon they'll be seen only once a month. It's wierd to not have blood taken every week. Both girls are down to two medicines a day and one of the medicines is only taken twice a week. Their weights are no longer of great concern, but I wouldn't mind it if they chunked up a little more.
Abigail and Ethan are doing very well. Abigail's apnea monitor continues to be silent and I don't anticipate it making any noise before we get rid of it. Ethan has begun to join in on the group kisses that me and the girls used to do where we all kiss four sets of lips at once in a circle. Abigail just started cooing and blowing bubbles and it melts my heart everytime I hear her.
I underwent my second, and hopefully last, vasectomy two weeks ago. The doctor threatened the removal of some parts if it didn't work this time, and I replied, "they'd grow back".
It's a bizarre feeling to not be dealing with their sicknesses on a daily basis. I was so conditioned, from the moment of their birth until transplant, to always be thinking something was wrong with my unhealthy girls, that it's hard to adjust to an almost normal life. I haven't had to shell out a copay in almost two weeks, where it used to be multiple times a week, either for medicines or for doctors visits. This is all good of course, but still hard to accept as reality.
Tuesday, May 20, 2003 8:45 PM CDT
This will be a very lengthy and somewhat unorganized update as over two weeks have passed. New pictures have been added.
We have great cause to celebrate the latest blood tests. BOTH GIRLS ARE SHOWING 100 PERCENT DONOR CELLS. They have officially achieved REMISSION as of yesterday. I was so excited that I had to let out a loud "YAHOO!". My fears of Madeline's original cells making a comeback are put aside for now. Both girls will be tested in two months to make sure these results are true.
Hannah and Madeline's other blood numbers from two weeks ago were great also. Hannah's liver function test came back much closer to normal and is no longer a concern. The only number to come back not normal was Hannah's IGG level, which has been effected by the steroids she was on for graft versus host disease. Hannah will have to remain on the once-a-month IVIG infusion for another three months. Tomorrow Hannah gets this infusion and they both are getting new blood counts done, with nothing likely to be different from the great numbers from two weeks ago.
Hannah has been free from steroids for a week now, and this also means that some of the other medicines will soon be removed from the daily dosing rituals. With the steroids out of the picture, the appetite wants to go as well. I put both girls on the hunger enhancer, marinol, to jump start their systems again. We welcomed the silly behavior because the munchies would soon follow.
I write this while knocking on wood: The girls have been fever free since the beginning of February during their transplant visit. Since birth, there hadn't been an entire week without one of them hitting at least 104 degrees. In the five years before their transplant, the girls must have consumed gallons of Tylenol and Motrin to reduce the fevers. Hannah had a headache the other day and it felt wierd to give her Tylenol, so wierd that I almost called the hospital for permission. It seems that the girls new lease on life comes without fevers. Please find some wood to knock on now.
A few days ago I told the girls to hop on the scale "to see if they put any weight on their butts". Madeline took my request literally and sat on the scale and because I laughed, Hannah did the same thing. Hannah has jumped up to 26.5 pounds and Madeline to 31.5 pounds. Hannah dipped a week ago to 25 pounds and that was what prompted the marinol. I wanted to see what the girls would do on their own so 12 days ago I stopped the night feedings and removed the NG tubes. Madeline has done great, but Hannah needed to be rehooked two days ago because I was concerned that she was getting dehydrated.
Aside from one vomit from both girls because they drank their protein shakes too fast, they continue to be barf and diarrhea free. That one incident didn't count as a true spew.
Madeline and I seemed to be the only ones not hit by Mr. Sandman one afternoon last week, so we set up for a private tea time. We drank out of tiny plastic cups and ate oatmeal cream pies. As you would clang wine glasses together, Madeline insisted on bumping our cream pies together. Then she said we needed to pass a candy bracelet back and forth, biting one candy charm off with each pass. In all she consumed 900 calories of cream pies and her appetite for dinner was definitley jaded. We both spoke British as best we could for over an hour. I love the individual time I get with my kids.
More with food: To make breakfast more fun I decided to make everything a different color one morning. We had blue Belgian waffles, purple scrambled eggs, and red orange juice. Although it got their attention and made it more fun, it didn't improve their calorie intake as I had hoped it would. The other night Madeline devoured four full ice cream cones and most times she couldn't even finish one.
On Mother's Day, me and the girls made Stacie a breakfast in bed of Belgian waffles(normal color) smothered in fresh strawberries and whipped cream. Hannah and Madeline were so excited to do something nice for their Mommy. Both girls dipped their waffles into coffee, which sounds somewhat good, but bacon dipped into whipped cream?(which they both enjoyed), I think not. I got Abigail's birthstone added to Stacie's family ring that I had given to her on her first Mother's Day. If all goes well with my upcoming surgery, I won't need to add anymore stones to her ring in the future.
Hannah and Madeline have been given the OK to attend kindergarten in the fall. We got them registered and they'll be in different classes, which I hope will be the best decision for them. We're excited and nervous. The germ festival of unwashed hands, constant nose picking, and snotty faces, combined with Hannah and Madeline, who will be without the aid of any of their immunizations, scares me to death. If we wait a whole year before putting them in school, they'll be so bored with the curriculum and won't get to benefit from the peer interaction. It will surely cause some anxieties when the first child gets sent home with the flu or the chicken pox.
In one of their silly moments, Hannah and Madeline pretended to be pregnant with stuffed animals shoved up their shirts. Each took a turn being the doctor and the patient. Madeline told Hannah to "push like you're pooping"(maybe we teach them too much), and out popped a beautiful puppy that was quickly wrapped in a blanket and placed on the chest of the proud mother, Hannah. I enjoyed watching them play, but I cried inside. Childbirth is something they'll most likely never get to experience due to the chemotherapy and radiation needed to kill off their cancer.
Abigail had her two month check up this past week and she is in the 75 percentile for height and weight and she has graduated to the next size in diapers. She endured four lovely shots that day and I got to hear a new kind of cry out of her, one of pain. She finally had her cardiology appointment and after an EKG and an echo, it was determined that she has pulmonic stenosis. She doesn't need to be seen for another two years for this problem that is causing her murmur. My Poppop, who is in his 90's, gave me early comfort with Abigail's murmur, as he explained that a murmur was detected in him 50 years ago and it's still there, and so is he. She'll probably be on her apnea monitor until she's six months old, which is fine because it gives us peace of mind. For the past four days, she has slept nearly nine hours straight through the night. The first night this happened, I was constantly checking on her and didn't get to benefit from some extra sleep. Now I just rely on her monitor to tell us if anything is wrong.
Ethan is doing great aside from another ear infection that has caused a fever and some very uncomfortable times during the day. His new favorite and overused word is "NO!". Although I don't like to hear it, I like knowing that he can express what he wants or doesn't want. He loves to be thrown high in the air as I count "one-two-three" before doing so. Later on, he counted "two-two-tweetwo", and threw one of the girls dolls in the air. He also mimics the way I tickle, using my nose on his ribs. After fears that he wasn't hearing the words we spoke and having a hearing consult, he has seemed to add new words with great clarity daily. The same thing happened when I questioned Hannah's speech when she was younger. Days after the speech therapist visit, words that were once hard to say, seemed to just role off of her tongue. At any rate, I'm not concerned anymore.
With weight on the climb, monitors not alarming, medicine's being dropped, happiness part of the daily routine, and the girls seeming to have the juice of the Energizer Bunny, it gives me great comfort when I return to work on a full time basis with the rest of the working world next week. After seven months of not working, it's going to be quite a change in our house. I was able to spend more time in the last seven months with my children than most parents get to do in a lifetime. I have always been a dedicated father, but the journey I was forced to brave has only made me appreciate my children that much more. Although we were burdened with negative thoughts on numerous occasions, it was them, all of our children, who pulled us through. I owe so many, too many, thank you's to an overwhelming number of people that have undoubtedly made this chapter in our lives more doable. A million thank you's to all of you.
Monday, May 5, 2003 6:00 AM CDT
New pictures have been added.
For the first time since October of last year, we all had a great week. It feels so foreign that we only had a couple of downers and not an endless supply of misery. Yahoo!
Since Abigail started her new formula and zantac, she hasn't had any low heart rates or apneas. She's even drinking more now that her reflux is under control. The purity of her smile does wonders for the soul.
Ethan was giving signs of an ear infection earlier in the week, but it didn't turn into anything. He does so many new things everyday that I have a hard time keeping up with it in my journal.
Hannah has been vomit and diarrhea free for over a week, and this hasn't happened since last year. Her weight is up to 24 pounds and her appetite is climbing. She is requesting soup for almost every meal. She had a couple of liver function tests this week, with the levels going in the wrong direction every time. Finally on Thursday, her numbers took a nice drop, and are hopefully going to make it to normal shortly. This was the only big scare this week, that Hannah's liver was being attacked. She has another test today, and I'll give an update if the news is anything but good. She can now tolerate a light tickling and I can soak up her positive energy of a good laugh.
Madeline has also been free of the bathroom from both ends. She is managing to get close to 900 calories a day from Doritos. You can smell her from a mile away, but it's the calories that matter. To make dinner more fun the other night, we played Fear Factor homestyle. We got some Chinese food and pretended that it was gross and they had to eat it to get to the next level. Walnuts were dried mouse brains, noodles were worms, and orange juice was cow bile. Both girls ate more for that dinner than they have for awhile. Unfortunately it only worked one night because Hannah actually started to get grossed-out at the thought of her food being anything but food. Madeline continues to pretend that her food is organs or insects.
Both girls have enough hair on their heads that when they wake up, they actually have bed head. When I look at pictures from only a month ago, they look so different. Both of their energy levels are up this week. I was able to take out the NG tube twice this week to give them a break from the overnight feedings.
We all got more sleep this week, the toilet is bored and doesn't know what to do with itself, energy levels are climbing, smiles and laughter are more frequently seen and heard, appetites and weight are up, and there have been no ear piercing alarms from a monitor. This week was almost a positve overload and it took a few days to start enjoying it because usually things go south as soon as I recognize the good in our lives. I hope this week feels like deja vu to last week, minus a couple of bad things.
Sunday, April 27, 2003 8:56 PM CDT
New pictures have been added.
Another week filled with good news, bad news, happy times, sad days, feelings of victory, and of taking too many steps in the wrong direction. I just want one week where I don't have anything negative to report.
For the first time in weeks, I was asleep long enough to dream one night. The dreams were so bizarre and seemed so real that when I woke, it took a minute or two to realize that none of it happened. Hopefully there will be more dreaming in the future.
Our constant in life, Ethan, is still doing great and is doing the normal terrible two stuff that the twins didn't get until they were three.
Abigail had her Upper GI test done earlier in the week. She drank barium and then was xrayed to confirm that her stomach contents were backing up into her esophagus. This is what has been causing the low heart rates and apneas which will be fixed by medicine. Her breathing has gotten much better and we've stopped the nebulizer treatments. She's begun smiling at us when we get close enough for her eyes to focus and she's started to have more head control.
Hannah finally has given the toilet a break from both ends. She felt yucky in the beginning of the week and then all of a sudden, her body filled with a glow of happiness. Her appetite is up without the aid of marinol and the current craving is sweet lebanon bolagna. She's eaten a whole pound of it in the past two days. Hannah's body is so frail that she can't tolerate being tickled. I took tickling for granted and I miss the belly laughs and smiles that result from a Dad attack. While outside one afternoon, Madeline was running in front of our house and Hannah wanted to join the race. I was so afraid that her legs were going to snap that I asked her to stop running and just walk fast.
Madeline had many vomiting spells and poop explosions earlier in the week that abruptly stopped the same day that Hannah got better. Her appetite dwindled so we tried marinol which only made her sleep. To stop the vomiting we gave her antiemitics every three hours, around the clock. Even at her worst, she still managed to play and be happy. Her food requests have been all over the menu and after watching a Fear Factor episode, she thinks that she wants to try live slugs.
Fridays clinic visit:
We took all three girls to get counts done this week and the day was going so well. The gap has narrowed with their weight, with Hannah at 23 pounds and Madeline at 28 pounds.
Blood counts:
Madeline
WBC 4.1
HGB 13.1
ANC 2148
Platelets 330,000
Hannah
WBC 7.0
HGB 14.8
ANC 5670
Platelets 204,000
Abigail
WBC 8.8
HGB 11.3
ANC 1672
Platelets 153,000(Yahoo!)
All of the counts look great, especially Abigail's platelets being in the normal range. Our fears of Abigail having the same ailment have been set aside, at least for now, and she doesn't have to have blood work done for another two months. The girls got to visit their primary nurses that we always seem to miss during most clinic visits. We left the hospital on such a high note and I was truely happier then than I had been in a long time. In hindsight, I was just setting myself up for disappointment. After we got home, we got a call that Hannah's liver function test from that day was very elevated. Acceptable levels are anything under 100, Hannah's was at 591. Her liver is probably being aggravated by graft versus host disease. Hannah has more blood work scheduled for this coming Tuesday to confirm the numbers. I'm uncertain of the treatment, but I'm sure it will involve more steroids. Shortly after that, another call announced that Madeline's stool sample from a week ago came back positive for C-Dif, a bacteria that effects the lower digestive track. She now has to take another antibiotic for three weeks. The next time I feel a parade coming on, I'm going to have a raincoat close by to protect myself from the downpour of misery that is always waiting to put a damper on our happiness.
On a happy note, today the girls celebrated their first 100 days from the date of their transplant. They no longer need to wear masks when going out, but still have close contact restrictions. They had a mask throwing away celebration in the exam room during their clinic visit. We had a cake with the words "no more masks" on it.
This past week was filled with many emotions, from very happy to extremely helpless. The passing of Tyler, a brave boy who was our neighbor down the hall during transplant at the hospital, has made our fears seem more real. Too many children, too many tears, enough already.
Friday, April 18, 2003 7:42 PM CDT
New pictures have been added.
Two weeks have passed since the last update for many reasons. One being that I've had a virus for the better part of the two weeks and been dealing with the kids illnesses at the same time. Due to my illness, we had to miss the girls normal Thursday clinic visit last week which I'm sure they didn't mind, a week without needles. There's barely been time to sneak in a shower, much less spend time on the computer. The elusive lure of the toilet took control of me and, I too, succumbed to the vomit monster. It only lasted one evening, but it drained me of life for the next few days. I write in my own personal journal every day, and for the first time since October I've had to put it on hold.
Abigail is as cute as ever but still has her problems. After catching a 'weeze' from her brother, Stacie took her to the doctor to find out if we could do anything to help her. Her doctor did hear that she had broncilitis and unexpectantly heard a heart murmur. Her doctor requested to see Abigail the following day to see if there were any changes, and unfortunetly there weren't. Abigail now has to do nebulizer treatments every six hours and has a cardiologist appointment in a few weeks. She continues to have her episodes of low heart rates and apneas that hopefully will be resolved after her GI appointment at the end of this month. She started out looking like Ethan, but as I look at Hannah's baby pictures, I think she's looking more like her.
Ethan is doing great. His vocabulary increases daily along with the changes in his moods. Being cooped up with the girls has given him his own case of cabin fever. More frequent trips out and a nice trip to the zoo gave his confinement a nice break.
Hannah is still not gaining weight like we had hoped. Her underpants won't stay on her waist unless there's something to hold them up and even the spandex pants are slipping off now. I tried overalls, but they're too loose in the crotch and her panties fall down. She's had watery stools for a week which have been attributed to a virus. Her appetite dwindled so I put her back on the marijuana pills and we achieved results instantly.
Madeline was doing great up until this morning when, at 5am, she paid tribute to the porcelain god. What followed was a day of vomiting and loose stools with every hurl. Because of the sudden onset, her maladies are probably due to a virus.
An unwelcome chain reaction story that's become too common in our house: Hannah wakes at 3am with an invite from the potty to vomit; she spews so hard that her NG tube comes up; she screams, waking Madeline; Madeline realizes that she's in her room alone in the dark and screams; Madeline's screams wake Ethan; Stacie, sleeping with Abigail, needed to be woken to get Ethan; Abigail wakes at the sudden movement; all six of us are up shortly after 3am, which is a good time if you're a vampire, but it's not a good time for us.
Today's clinic visit:
Madeline vomited and stooled in the car on the way to the clinic. Hannah is a pro at both of these bodily functions and loves to help with her veteran knowledge and give pointers during someone else's onslaught of illness. Madeline, on the other hand, is extremely uncomfortable and loathes both functions of her body, which made for many screams today. Both girls got their biweekly IVIG and, again, this time Madeline had a reaction that caused a horrible headache. Madeline barfed more times than I could count today, blowing through just as many pull-ups as the amount of up-chucks. I'm very thankful that the IVIG will now be done monthly instead of every two weeks.
Madeline's final bone marrow biopsy results came back today and it was what I expected, but wasn't ready to hear. She now has 4 f her original 'bad cells'. Not too many weeks earlier, her original cells made up 2 f her bone marrow. If the trend continues, she'll need T cells to be infused to fight her own cells. One of the side effects of this treatment is graft versus host disease. Both girls will have another close look at their cells in a month. Today Madeline weighed almost 31 pounds and Hannah weighed just over 23 pounds. With eight pounds separating them, it's like their not twins anymore. Their blood counts were very close to one another today.
Counts:
Madeline
WBC 8.7
HGB 14.1
ANC 6786
Platelets 379,000
Hannah
WBC 8.8
HGB 15.8
ANC 6512
Platelets 233,000
I hate the pessimist that I've become when it pertains to my children's health. I can't help but to think that Madeline's counts will only get worse and that Abigail will be stricken with the same illness. I become afraid when I look into Abigail's eyes, because I see too many similarities and not enough differences from the twins. Damn the tired brain for its negative thoughts. During the few upticks in our children's health these two weeks I wouldn't let myself think that things were getting better, so I didn't have to deal with the disappointment when things fell apart.
Monday, April 7, 2003 8:20 PM CDT
New pictures have been added.
The update is many days late due to a sick household, sorry. Stacie and I are fighting the sniffles, and I've progressed to a minor ear infection being treated with antibiotics.
Abigail is still doing fine and has rolled over twice in the last week. She's having an average of about three 'episodes' a day, where her heart rate drops below acceptable levels. Because it only happens during bottle feedings, the doctor thinks that it's being caused by reflux. She'll be getting an upper GI check done soon to confirm it so that it can be treated as such. Although reflux is not uncommon, it's just one more scary similarity in how Hannah and Madeline started and I can't help but to fear the worst. She becomes more and more alert of her surroundings everyday. Occasionally we unhook her from her monitor, like after a bath, and enjoy holding her while she's untethered. That's when I felt a true bond to her and she felt like she was mine, not property of the medical world. Her belly button fell off and I've kept it just like I have with Ethan's.
Ethan started the cycle of 'the sickies' in our house and is also being treated for an ear infection. But for having pain, he sure does well and enjoys being comforted by me, which I'm loving because generally he'll only take comfort from his Mommy.
Hannah has given me more stories for the Vomit Monologues, a work in progress. Between 3am and 4am for four straight days she completely emptied her stomach, and of course she hurled the NG tube. There was only one day that I reinserted it at that hour, the other days I waited until the sun came up. It seemed like everything from dinner and before bed hadn't digested at all. We reduced the rate at which she gets her overnight feeds to try and stop the spewing and it worked. The only problem was that I had to make up for the loss of fluid and calories throughout the waking hours. She is still eating well on her own but has trouble meeting the fluid guildlines. Her latest repeat request is hot wings. She always feels like she's going to hurl after taking any fluids. I think that in some way it's psychological as a result of having to chase all of her meds with fluid during transplant. She vomited more often than not during med times and I think that she associates fluid intake with barfing. She's only just begun to drink out of a sippy cup without feeling that the 'throws' are upon her. Hannah's GVHD on her hands and feet is still the same, slightly rashy.
Madeline is doing really well and I can't remember the last day that she up-chucked. Her hemorrhagic cystitis is all flushed out and she's completely off all of the pain meds. There were a few days after the cystitis had left that she was apprehensive about peeing, but was elated each time she 'went' without pain. She is now down to only two medications and one of them is only taken twice a week. Aside from an infrequent cough, Madeline hasn't looked or felt better in weeks.
The weekly clinic visit:
Hannah and Madeline both had CBC's done on Thursday. Madeline had a bone marrow biopsy done with final results a couple of weeks away. Hannah insisted on being by her side while she was sedated and after she fell asleep, she expressed her concern for Madeline and was relieved that she wasn't getting the sleepy medicine this time. Madeline's weight is up, but Hannah dropped a few ounces this week. Madeline came-to from the sedation very happy, which is not her normal routine. Their IV's were left in so that they could get their biweekly IVIG the following day at the King of Prussia clinic.
The IVIG was infused on Friday and for a change, Hannah didn't have any reactions to it. Madeline, on the other hand, spiked a fever toward the end of the infusion and screamed for several minutes. Even with the wailing, this was the best IVIG visit yet. If all goes well, they'll only be a couple of IVIG visits left.
Blood counts:
Madeline
WBC 5.3
HGB 12.0
ANC 1431
Platelets 302,000
Hannah
WBC 9.9
HGB 14.3
ANC 7227
Platelets 202,000
Madeline and Hannah have decided to treat their NG tubes like jewelry sometimes. Madeline dances with hers and pretends to do karate with it, like it's a weapon of some kind. When they go to the bathroom, they wrap it around their ears and forehead so it doesn't dip in the toilet. With the tube, Madeline can create heart shapes, bows, and squares. Anything to pass the time.
Madeline has been feeling so well that she now has a new found love for Ethan. Since his birth she's been jealous of him. The other day, while they were fighting with eachother, I picked them both up with Madeline in the middle. I told her that I was making a Madeline sandwich, with me and Ethan as the bread. I woddled to the fridge with both kids in my arms and pretended to dump condiments and anything that I could find into our 'sandwich'. Ever since that moment, she's been nice to him, giving him hugs and kisses spontaneously throughout the day, and in turn, he's acting more gentle towards her. There has even been requests for repeat 'sandwich' parties. They've been taking baths together, but because Ethan has an infection, they haven't for the past few nights. Well tonight, I gave Ethan his bath first and dressed him in his PJ's. Madeline hopped in next and while I was getting a towel for her, Ethan jumped in the tub because he wanted to be with his sister. He didn't even care that he was dressed and because I needed the laugh, I didn't care either. It's great to see them interact like this.
Do you want to know something amazing? If a starfish gets an arm cut off, it will regenerate and form a new arm. Something very similar can happen to a man after they have a vasectomy, it's called recanalization. Yes, that man is me. In an effort to halt my fertility, I got 'snipped' last year. A week after being 'fixed', we found out that we were a few weeks pregnant with Abigail. A little ironic, but definitely meant to be. Shortly after this finding, it was determined that Hannah and Madeline would need a bone marrow transplant and needless-to-say, with all of the worrying, I forgot to get a specimen checked for potency at the appropriate time. Nine months later, on the day after April Fool's Day, I was informed that I still have little swimmers. Although very quick, I'm not looking forward to the, oh so fun, process of being resterilized. I normally wouldn't share such a personal story with so many people, but this one has the makings of an urban legend.
Friday, March 28, 2003 8:54 AM CST
New pictures have been added.
Another week has flown by and it was definitely an improvement over the past couple of weeks. It's been said that "time flies when your having fun." It goes by just as fast when your not having fun. Stacie and I have finally graduated from the pergatory of sleep deprivation, to a few solid hours of slumber a night.
Madeline spent the weekend in the hospital getting her pain under control. A renal ultrasound confirmed the cystitis that had been tearing her up emotionally and physically. A urine sample was never successfully collected, but it was assumed that there was an infection, so she was put on antibiotics. She also started steroids for the inflammation. Her pain wasn't truely under control until Sunday, the day she was discharged. Her pain med, Nubane, is IV only, which presented a problem since she no longer has her Broviac. They did a trial run of the med being put into her belly via the NG tube and it worked. When Madeline walked through the door at home, she was a different person, someone I hadn't seen in nearly two weeks. She was so happy to be home that she hugged and kissed her brother and sisters.
Hannah is eating like crazy. Tacos, yogurt, and pizza, oh my! Tacos, yogurt, and pizza, oh my! Tacos and pizza have been requested at all hours of the day and night. I have a spare pizza and taco meat in the fridge at all times. Her face is notably rounder, probably from the steroids. Talking to the toilet usually meens barfing. But in Hannah's case, she really talks to the potty while she's 'going', as if it were her therapist. She told it that she missed her Mommy and Madeline while they were in the hospital and wondered how Madeline could remain her friend if they were separated. The attrition of Hannah's muscles is so severe that she can't even walk up one step of our stairs without crying for help. She'll most likely start physical therapy soon.
Abigail and Ethan are doing fine. Abigail has more blood counts scheduled in a couple of weeks, which makes me very anxious.
The girls had their weekly clinic visit on Tuesday which went fairly well. Some medicines were removed from their diet, and plans for others to drop were only days away. Madeline will have a bone marrow biopsy done next week to look at the cells that shouldn't be there.
Counts from the day:
Madeline
WBC 10.8
HGB 13.1
ANC 8824
Platelets 630,000 (wow)
Hannah
WBC 16.5
HGB 12.8
ANC 14850
Platelets 248,000
The NG tube, the tube that goes in their nose and down to their stomach, has been barfed up several times this week. I feel like I'm in a rodeo, chasing down a calf to hog-tie, when it has to be reinserted. I would win the blue ribbon every time if it were contest.
I have a love/hate relationship with the steroids. It's a great drug in that it made the inflammation of Madeline's bladder go down, it has Hannah's GVHD under control, and has increased both of their appetites ten fold. The emotional rollercoaster is what gets me. At least with a rollercoaster, you can see the tracks in front of you and have some advance notice of going up or down and left or right. Just as everybody is zigging, one of them decides to zag. At times, the steroids make Madeline revert back to being a baby and she tells us that she wants her teeth cut out like a baby. The first night Madeline was home from the hospital, everything was going great, until she accidentally spilled a yogurt on the floor. She cried and said that she wanted to be "lost outside". She has taken her special ring off and stomped on it with her shoe in protest of me telling her that I loved her. I'm so thankful that yesterday was the last day for Madeline's steroids and soon Hannah will be released from them as well.
Our 'freshly squeezed misery' got a little sweeter this week. Hopefully the trend continues for the future weeks.
Friday, March 21, 2003 10:02 PM CST
New pictures have been added and they're not so depressing this time.
Another stressful week with very few breaks and many awful moments. Thank goodness there were some happy twinkles to break up the endless supply of yuck(the stuff found on the bottom of your shoe after leaving a deserted roadside restroom).
THE GOOD, THE BAD, AND THE UGLY (and other stuff)
THE GOOD:
Hannah has been doing really well with her appetite. She was taken off of the THC pill, but the steroids that she's on for graft versus host disease are giving her the munchies. Her main request is tacos, tacos, and more tacos, morning, noon, and night. The other day she made me make and eat tacos with her before I had even had my morning coffee. One night while eating, you guessed it, tacos, she proclaimed that her arms were getting bigger before our eyes(she knows that we're concerned about her weight). She has made up a song about tacos. It goes : "I'm five and I like tacos, yes I'm five and I want tacos, taaaaacooooos!" This caused a much needed laugh. I feel as if my old Hannah is returning. Tonight Hannah ate three pieces of pizza and drank three drinkable yogurts for a grand total of 840 calories, when her calorie need for the day is only 1200.
Abigail shocked us the other morning. She woke up on her belly when I know I put her to bed on her back. I thought for sure that it wasn't possible for a baby to roll over at her age until I saw it for myself this afternoon. She arched her back and turned her head until she was on her side. I picked her up before she made it all of the way over. Another good note, she sleeps better than I remember the other ones at her age.
Ethan is always good. He's my one constant and someday he will know that he was a key factor in our sanity through this whole mess.
THE BAD:
Madeline has had a tough week. I had hoped that the hemorrhagic cystitis would have cleared by now, but it hasn't. Her screams of pain will forever ring in my ears. You would think that screaming all day and night would tire her and make her voice hoarse, but it didn't. I'm waiting for one of our neighbors to give me questionable glares as a result of all of the around-the-clock screams that echoed through the community. A few days ago she had a pink tinge in her urine and there was a clot in her pull-up. Since then, the pink has gone away, a sign that the cystits is getting better. Her pain never subsided and we think it actually got worse. A few days ago their doctor offered to admit her, but at the time, the treatment would have been no different than what we were giving at home, massive fluids and morphine. This morning Madeline screamed, "I want to cut off my pee-bug!!!". This is what she calls her vagina, and it hurt so bad that she didn't want it anymore. An early morning call from the hospital insisted that she be admitted today. Stacie took her down and the thought was to put a catheter in to irrigate and flush the bladder and to also put morphine directly where the pain was originating from. No luck, just wouldn't go in. An ultrasound was done with no ill findings. The urologist thinks that she has mild hemorrhagic cystitis with a severe bladder infection. Antibiotics will be given as soon as they can get a good sample of urine which hasn't happened yet tonight. For the inflammation, Madeline was given ibuprofen, which is a taboo pain reliever for oncology patients because it alters the effectiveness of certain components of the blood. Her counts are high enough that it shouldn't effect her. Hopefully she'll only be in for a couple of days.
Hannah was up to eleven medications a few days ago and it took nearly an hour to give them all. Some of them are pills that I have to crush and mix with water so I can shoot them through her NG tube. My fingers are dyed yellow by one of Madeline's medications. I'm beginning to feel like a chemist or, with my lack of sleep, Jekyl and Hyde.
THE UGLY:
One night while Hannah was barfing into a bowl while laying on the couch, I heard, during her last heave, a loud and thunderous burst from her nether regions. I thought nothing of it until I moved her and saw that her, falsely stated, super-absorbent diaper, had leaked diarrhea all over our couch. So at 3am I steam cleaned our couch and amazingly it all came up. Again, I don't know what I'd do without a steam cleaner.
Similarily, Madeline had an accident, but the outcome wasn't as favorable as Hannah's. She had thrown up on our comfy chair, which ordinarily wouldn't be a big deal, but the contents of her stomach were dyed a lovely bile-yellow by one of her medicines. Needless to say, this stain laughed in the face of our steam cleaner and we would be better off if Madeline threw up on the rest of it so it was all one color. I think I'll petition crayola to get bile-yellow its own crayon, because its such a well known color, at least in my house it is.
OTHER STUFF:
The girls celebrated their, not so happy, 5th birthday on Tuesday. Although Hannah had just climbed out of her gully, Madeline only felt well enough to try on one of her presents. She then retired to the couch, where she had already been for several days. I thought she was doing a 180 when she wanted to open presents, but it was short lived. One or both girls have always been sick on their birthday. With the transplant out of the way, I thought that this year would be the first 'healthy' birthday, and I think it hurt more because that's what I was expecting. Another point awarded to Cancer. We didn't even get to sing Happy Birthday or eat the beautiful cake made by Stacie that's still in our fridge. Madeline's pain rocked our house like an earthquake. We're going to have a do-over party when they're both feeling better, or at least the same.
The weekly oncology visit:
On Thursday, I took the twins to CHOP for their weekly visit. Madeline traveled well because she was nicely drugged. When we got there, Hannah started asking for pizza, and didn't stop until she got it a few hours later. Stacie came down seperately with Abigail for her first visit and blood work. Hannah and Madeline got their biweekly IVIG that is always a pleasure. Hannah always seems to have some reaction to it, and this time it was back pain and a hurt "brain". A urine collection on Madeline had been unsuccessful in the clinic first, before she got admitted today. Abigail had her blood squeezed from her heel, which resulted in a good lung exercise.
The blood counts:
Madeline's
WBC 8.4
HGB 14.0
ANC 5376
Platelets 465,000 (wow)
Hannah's
WBC 18.0
HGB 13.1
ANC 16380
Platelets 271,000
Abigail's
WBC 9.0
HGB 15.8
ANC 1440
Platelets 81,000
Madeline's counts are great, especially her platelets. Hannah's counts aren't real, they're inflated due to the steroids she's on for GVHD. The GVHD she has is mild by the way, only a faint skin rash. Abigail's counts are okay, and I say this with not much enthusiasm. Although her platelets are up by nearly 40000, they're not where I wanted to see them. Her counts are "good enough to keep her out of trouble". She'll have another blood test done next month. My gut and the unwelcome pessimist in me, tell me that she will be in need of some help in the future.
Everyone knows the cliche: when life gives you lemons, make lemonade. What am I going to do with so many vats of freshly squeezed misery? Maybe I'll run a late night infomercial for a newly created, by me, cleaner, Lemonglo-sure to zap the zest right out of your life. All for the familiar low price of $19.95. And if you act now, I'll throw in a free plastic foot that will be sure to kick you while you're down. The mind does horrible and silly things without the luxury of sleep.
Thank you all for your prayers and support. Hopefully, with Spring in the air, my sprouts will begin to bloom and thrive like they were intended to do. Have a good week.
Sunday, March 16, 2003 1:06 PM CST
I usually like to update at the very end of the day or early in the morning before anyone is awake. Given that there hasn't been a beginning nor an end to a day, I've been incapable of writing. The calendar is the only thing telling me that the day has changed, and I think it lies sometimes, for this week has been a seamless hell.
With regard to Abigail, her platelets dipped to 40000, then began a slow climb to 45000 before being discharged on the 12th. She was warmly welcomed home by all and we're finally a united family of six. She came home on an apnea monitor that has alarmed a few times with low heart rates. The monitor gives us peace-of-mind that we'll be well informed if there's a problem with its high pitched beep. She wouldn't be one of mine unless she pooped and urinated on me, which happened in the first couple of days. She'll be followed at Children's in a couple of weeks to see where her platelets are. I don't want to add her name to this web page until I truely know that there's a problem.
Hannah and Madeline went to the satelite office for the first part of the week to get fluids because they were dehydrated. During one of the visits it was determined that Hannah had some mild graft versus host disease and would be put on prednisone. Madeline had been complaining of pain while urinating for a couple of days. The marinol, 'pot pill', has done wonders for Hannah's appetite and mood. She gets a permasmile and gets the munchies. Her first request for food in 6 days was sausage and it was great to see her smile. During the last satelite office visit, Hannah was so dehydrated that a vein couldn't be pricked. After three tries we were sent home with an NG tube for Hannah to get some fluids. Hannah said, "booboo's in this hand, booboo's in this hand, no more booboo's."
The next morning we left for Children's Hosptial, but not before Hannah barfed the NG tube up. The ride down was horrible because Madeline had to pee, but nothing would come out. In the office she was given a dose of morphine that knocked her out and made her more comfortable. I was able to focus more attention on Madeline, because, thankfully, Hannah was 'high' and content from her morning THC pill. The doctor dropped another bombshell on me today. Although Madeline's bone marrow results showed that 98% were donor cells, the remaining cells were tainted with Madeline's original 'bad' cells. She'll have a biopsy done next month and treatment will be discussed then. It's possible that she'll get some of the original donors T cells that are still at a collection site in hopes that they will fight off her old cells. The nutritionist determined that both girls needed constant infusions of formula in order to gain weight. I was sent home with some antianxiety drugs for both and NG tubes to be put in by myself.
The ride home went just as bad as the trip down. When I carried Hannah out of the car, she cried and said her hips hurt. Later in the day, she couldn't straighten her legs or stand. A call to the hospital gave no answers and I assumed it was from the dehydration. She didn't move from the couch for two days and finally yesterday stood for a minute before returning to her butt groove. She weighs just above 22 pounds and her tiny body looks so frail. It hurts us to look at her because she looks like somebody from a country riddled with famine. I wish I could give her some of the 15 pounds that I've gained since October. Her knees are the widest part of her legs and now my identical girls look nothing alike.
Madeline's pain never subsided even with good doses of morphine. It was determined that she has hemorrhagic cystitis from one of the chemotherapy drugs given back in January. The only way to get rid of it is to flush it out. It caused her to pee, literally, no less than 120 times yesterday. Only small amounts trickle out every 5 to 10 minutes followed by a deathly shrill and tears.
The days get harder and longer when we thought they would get easier and shorter. It's sad to say, but true, that I would gladly trade one of the girls worst weeks in transplant for the week we just endured. We did expect peaks and valleys out of transplant, but for some reason, despite all of the climbing gear that's hitched up, we can't seem to get that first handhold in our ascent to a somewhat normal life. Everyday this week I told myself that tomorrow has to be a better day. I'm still waiting for 'tomorrow' to arrive.
Monday, March 10, 2003 9:50 PM CST
New pictures have been added today.
I don't know where to begin, so this may be a bit jumbled.
Abigail went to room air on Friday, the same day that Stacie was discharged. Her platelets dropped to 132000, then to 118000, then to 93000, and finally today they had dropped to 59000. It doesn't look like her platelets are catching on, but the doctor still thinks it's possible. Our situation has made me a little pessimistic, but I have to keep thinking that this CAN'T happen again. She has done great with her feeds and last night the umbilical line was removed because she no longer needs IV fluids. As of last night, she was going to be discharged today. A "blue episode" and her morning platelet count will keep her in for a few more days, and when she does come home, it will be on a monitor. I love to see her without any tubes in her nose or mouth. I was very stressed the other day and when I finally got to hold Abigail, all of my worries melted away. It was such a calming feeling.
Two nights ago, when Madeline was feeling okay, she asked if she could go see Abigail, and since we were given the 'okay' to pick Stacie up at the hospital, I didn't see much difference. The second that she got to see her, she said, "can I hold her?". I handed Abigail to Madeline and she asked if she could feed her. Madeline fed her most of the bottle and she helped me burp her. She is very excited about having a little sister. I told Madeline that I used to sing to her when she was in the NICU and she agreed that we should sing the same songs to Abigail. On the way home, Madeline noticed her "favorite moon" in the sky and she told that the moon is a girl like her and that she lost her hair like herself. I inquired how she lost her hair and she responded with "the same medicine I got". I asked how they got the medicine to the moon and she said, as if I should have known, "long tubes".
The girls had their clinic visit on Friday and it didn't go very well. Hannah was so dehydrated that it was hard to find a good vein. Thankfully it only took one stick for both girls. They both got their biweekly IVIG and spiked fevers at the same time which was such a blast. After screaming, vomiting, and shaking for about a half-hour, they finally began to relax. Hannah threw up several times and was given some antiemetics that helped relatively fast. I was told that there was a good likelihood of Hannah being admitted to the hospital over the weekend for dehydration. Great news came out of a not-so-fun visit. The final results of the bone marrow showed that 98% of the cells were from the donor. I was told that this is a great number. SUCCESS!!!!!!!
Blood counts from the visit:
Madeline
ANC 2226
WBC 5.3
HGB 11.3
Platelets 396,000
Hannah
ANC 7800
WBC 10.0
HGB 13.3
Platelets 287,000
We kept Hannah heavily sedated with antinausea drugs all weekend. She only woke to vomit, take medicine, and to take little sips of juice. Sunday didn't go so well and I knew she didn't get near enough fluid into her shriveling body. Just to get her to take a sip of juice would take about 20 minutes and would wind up with both of us in tears.
Today we went to the satelite office to get more fluids in both girls and to try and figure out why Hannah hasn't eaten anything, literally nothing, in five days. She has lost considerable weight and it scares me very much. Elastic waist clothes used to be the only thing that would stay up on her. Now they're even a little loose. Hannah had some xrays taken that showed gas and the possibility of a GI infection. What was even more shocking to find on the xray was the cuff to her Broviac still imbedded under her skin. Just when you think the icing has already been put on the cake, here comes another layer, and another, and another. This piece was supposed to be removed, so somebody has some explaining to do and they better be wearing a face mask (I'm sure the scene will be like something from Alley Mcbeal, where she plays out in her mind what she really wants to do). The girls were put on medicine to help move the gas and infection out. Hannah has been prescribed a synthetic THC, which is the compound found in marijuana that causes the munchies and helps subside nausea. Tomorrow she'll take her first dose and I hope some of the paranoid side effects don't show up. Their IV's are being left in overnight so that they don't have to be stuck again in the morning when we return to get more fluids. Tonight I started at 6pm, at every half-hour, with Hannah's nightly medicines, and finally at 9pm they were all in.
Ethan seems to be the one true salvation in my day this past week. His smile, giggle, and overall joy gives me the strength to want to wake in the morning. I do believe that if he were to just get the common cold, it would push us off the deep end.
Lately, I've been thinking that the worst will happen in hopes that it won't. Well, the worst has happened and then some more got added on top of it. Next time around, I may order a pie instead of cake that can't seem to stop getting iced.
Friday, March 7, 2003 5:34 AM CST
New pictures have been added today.
We had a very eventful week.
On Tuesday night Stacie's water broke at 11pm and we rushed to the hospital completely unprepared for the birth. I felt like a chicken with its head cut off. With only three reps of pushes, Abigail Morgan was born at 4:44am, weighing 7 pounds-11 ounces, and with a head of dark hair. What happened next was similar to a scene from E.R., and we really didn't need to see that again. Abigail was unresponsive at first and looking blue. Her arms and legs flopped without movement. Two doctors and four nurses surrounded her tiny body when the crash cart was ordered. Our jaws dropped and our hearts nearly pounded out of our chests. Finally, about fifteen minutes later, after having her lungs sucked out and some massive stimulation given, she became more responsive. Thank goodness the crash cart wasn't used. We were able to see her for a minute before she was rushed off to the Special Care Unit of the hospital. Her mouth was bruised by the quick exit out of the womb. Stacie was fine and we had a couple of quiet hours to soak it all in. If the birth was tramatic enough, the news we got next was. Abigail has low platelets(33,000). The second count was 39,000, not much better. Our initial fears are that we've got another Hannah or Madeline to care for. Abigail's veins wouldn't take an IV, so her umbilical line was used. She was given immunoglobulins, something Hannah and Madeline were scheduled to get the next day, in hopes that it would jump start her platelet count. At 8pm her platelets had dropped to 21,000 and she was given a transfusion. Not even a full day out of the womb and she had her first transfusion of a blood product, why!? We felt a complete range of emotions within the first day. Stacie was able to hold her for the first time that night.
The next morning Abigail's platelets had jumped to 183,000 due to the transfusion, so it's not a true number. She was given another dose of IVIG and the hopes are that she'll maintain her own platelet count, but we won't know for a couple of days. This can't be happening again. Abigail had a CT scan of her head to see if there was any brain injury and thankfully that part of her is okay. She is breathing without the assistance of a machine, but has some extra oxygen to help with her saturation levels in her blood. It's sad when I can understand every word out of her doctors mouth without having it explained. I held her for a couple of hours today and it felt so nice. She is so cute. It must be an inherited trait that my kids poop when I'm around. I changed two of them only a couple of hours apart. Prayers for her platelet problem, to just be a newborn thing, are welcome.
On the home front, everybody is doing okay with a hydrating battle with Hannah. This past weeks food menus have been odd. Tacos for breakfast one morning, chicken soup the next, and Madeline wouldn't be Madeline unless she had green beans dipped in syrup for dinner. Today the girls are getting IVIG along with their weekly check up. I'm not looking forward to the screaming when they get an IV.
To add to our stress level, someone stole Stacie's cell phone out her room. I bought a new one for her on my way to the hospital, but not before it was found in the basement of the hospital by someone. Someone stole it but wasn't able to make calls on it, so they got rid of it.
Because I like to write about the happy moments in our lives in every entry, I leave you with this. Before bed the other night, Madeline, looking perplexed, asked me, "why can't you see a fart?" They definitely have a way of putting a smile on your face.
Saturday, March 1, 2003 9:10 AM CST
Just when the barfing seems to subside and we celebrate, another wave of the vomit festival comes to town. Ethan has enlightened me on the true meaning of projectile vomit. He spewed his homemade cottage cheese nearly seven feet across the carpet. The new steam cleaner has already paid for itself a few times over. His stomach bug put us on high alert because he also had a fever and we feared that the bug would pass to the girls, which would have resulted in a hospital visit. We had a couple of days this week where all three kids were hurling.
Madeline did start a fever of around 100 degrees and I was certain it would shoot up. It's not very worrisome until it gets to 101.5 degrees. Two nights ago, at midnight, her fever hit the magic number of 101.5 degrees. I was unhappy with that reading, so I took it fifteen minutes later and it had dropped half of a degree, out of the danger zone. She's maintained a low grade fever for a few days now, and I think her new immune system will be able to fight off whatever infection is inside of her. It's hard to distinguish the girls vomiting and diarrhea from what Ethan had, but I'm almost certain they didn't catch his bug.
Our weekly visit to the hospital yielded great results with regard to their medications. They can stop the antirejection drug and the blood pressure medicine. Now they are down to three medications with good chances of losing another next week. Hannah has maintained her weight this week but must gain some in order to not have an NG tube placed to aid in calorie intake. I have one week to help her put on the ounces, wish me luck. Now that they don't have their Broviacs anymore, they have to have blood taken with a needle, which causes many tears and loud yelling. Madeline screamed that the lady taking the blood was "stupid", and Hannah screamed, "just do it! just do it!" because the anticipation of being stuck is actually worse than the prick itself.
Blood counts:
Madeline:
ANC 3127
WBC 5.3
HGB 11.2
Platelets 282
Hannah:
ANC 2214
WBC 5.4
HGB 11.9
Platelets 196
Stacie and I have noticed that the girls have changed since the beginning of their journey to a healthy life. They seem so much happier overall and more mature. I look back at pictures before treatment began and I can't believe how unhealthy they looked, with skin infections, severe eczema, horrible bruising due to low platelets, and their itching watery eyes. The new marrow has made a world of difference for the whole body and mind. We're still waiting for final results of the bone marrow aspiration taken last week.
Monday, February 24, 2003 8:29 AM CST
I'll be updating every few days from now on unless there's reason to write everyday.
The vomiting has subsided quite a bit over the past three days. We haven't had to repeat meds for three days, which is really nice for the girls. It's great to take a vacation from the bathroom.
Hannah's appetite took a huge jump forward during lunch the other day. She ate two srambled green eggs, three slices of bacon, and a slice of buttered toast with jam on it. It was nearly 500 calories, which is almost half of her calorie need for the day. Madeline, and her unusual taste buds, were enjoying the green eggs on top of the toast with jam on them together. It looked like a taco that could only be found in a Suess book.
Today I noticed the beginnings of hair regrowth in the girls. They'll be so excited when it comes back in.
At bedtime the other day we began reading 'Charlie and the Great Glass Elevator' and all three of the kids listened. The girls love the funny things that Mr. Wonka says.
The girls enjoyed some chocolate fondue a couple of nights ago. They dipped bananas, marshmallows, cherries, and apples into the great mixture. They called it a "feast".
I noticed the girls had red palms and feet the other day and I feared that GVHD(graft versus host disease) was the culprit. Thankfully the next morning everything looked okay.
Preliminary results of their bone marrows show normal marrows. Hooray!! More indepth results will be back later in the week and I hope they're the same.
Friday, February 21, 2003 9:35 AM CST
Yesterday was very eventful. Thank goodness we left early for the appointment because we got stuck in some of the worst traffic. A block away from the hospital Madeline began to vomit and refused to throw up in the cup that I offered her. Thankfully she wasn't able to eat this morning and she only got a little bit on her sweater.
Madeline had to have the blood taken with a needle and this bent her out of shape for about a half hour. The check up went okay with the girls being able to reduce the antirejection drug some more. At the rate that their being weaned off of it, they may be done with it in about five weeks (my guess, not their's). Hannah dropped over a pound in a week and it's not concerning because her appetite only began to increase a few days ago.
They sedated Hannah first and she was only gone for about 20 minutes. Everything went as planned with Hannah, then they sedated Madeline. Hannah woke very cranky and she must have bitten her lip while in sedation because it was huge. Hannah noticed that her Broviac was gone and said, "I want my Broviac back". Then she noticed that her statlock was gone and got even more upset and was eventually calmed with some morphine for the pain.
While consoling Hannah, one of the nurses came in and told me that there was a problem with Madeline. Her line had broken off during the removal and she had to be transported to the IR on a different floor. I was very scared and fortunately the IR team came upstairs instead. Scar tissue had formed around the cuff of the Broviac inside of her body, making it hard to be pulled out. This doesn't happen often, but of course it had to happen to us. An hour and a half later, Madeline was returned to me very cranky. She was given an antibiotic and some extra morphine for the pain. They had to make a 2cm cut in order to free the cuff from the scar tissue. We were finally able to leave at 4pm and when I put Madeline down to walk, she said, "can you hold my hand, I took some funny medicine". She was very woozy from the sedation, antinausea meds, and the morphine. I was surprised to see her want to walk.
When we got to the car, I took some migraine medicine. The hour long trip on the way home was horrible. When we got in the door, I barely made it to the bathroom to throw up. While I took a hot shower to hopefully make my head feel better, both girls barfed downstairs. Hannah hurled dinner up too and again after her nightly medecine. It was a big vomit party and unfortunately I was invited as one of the participants in the games.
The girls blood counts:
Madeline:
ANC 2822
WBC 8.3
HGB 12.2
Platelets 277
Hannah:
ANC 1715
WBC 3.5
HGB 11.0
Platelets 167
Hopefully we'll get the results of the bone marrow biopsy later today.
Wednesday, February 19, 2003 7:02 AM CST
New pictures have been added today.
Sorry it's been a few days since I last wrote, but the only major thing happening is snow, snow, and more snow.
Hannah has had a rough time with the meds the past few days. She had to take them three times the other morning because they wouldn't stay down. Tomorrow they're both scheduled to get their Broviacs removed.
I was trying to keep Hannah away from cottage cheese one day while Madeline was sitting at the table eating some. I left the room and when I returned, both girls turned and smilled at me as if they had done something wrong. I asked, "what are you doing?". They replied, "telling secrets". I inquired, "what secrets?". Madeline smirked and told me that she was feeding Hannah her cottage cheese and that she wouldn't vomit from it. They had fun being sneaky about it and the cottage cheese stayed down.
For the second time this winter our heat stopped working. This time the snow had clogged our intake valve and formed an ice dam in the tube. Only one place would make the trip out and thankfully it was an easy fix. The house only got down to 70 degrees even though it was out for several hours. After the fix, I thought it was now okay to take the kids outside and play in the snow, knowing that they could return to a warm house. The girls were amazed at how high the snow had accumilated, it was up to their bellies. My kids have never seen this much snow before. Madeline made a snow angel and Hannah made her own slide out of the shoveled snow. Ethan tried to walk in it and got frustrated. After a bit, we all came inside and had the ceremonial hot cocoa and marshmallows. It was Ethan's first time with hot cocoa and he made such a mess.
Wish us luck tomorrow during the bone marrow biopsy and removal of the lines.
Sunday, February 16, 2003 1:40 PM CST
New pictures have been added.
The vomiting has now been reduced to just twice a day, during the daily medicine routines. Madeline didn't barf at all yesterday. Their appetites are increasing with every passing day. Pepperoni is now the biggest craving, being requested at breakfast (yuck), lunch, and dinner. Because they're not actually eating much of the pizza, I bought the pepperoni by itself. We're slowly introducing dairy back into their diets, resulting in a cottage cheese catastrophe the other day.
The girls have requested that I read Charlie and the Chocolate Factory again at bed time. Madeline insists that someone should make a sequel to the movie. She came up with her own story line with the characters returning as adults married to one another and having many kids. Each adult was responsible for caring for the Oompa Loompas daily activities, like breakfast and helping them sleep at night. Maybe Madeline and I will talk to Warner Brothers and get a deal worked out.
Yesterday we bundled the kids up and went and played in the two inches of fresh snow. Stacie filled spray bottles with food dye so the girls could paint in the snow. It wasn't very effective but they had fun anyway.
Tomorrow the girls were scheduled to have their Broviacs, an infection risk, removed for good. Unfortunately with this latest snow storm, it may have to wait a week or so. I was looking forward to having them be tubeless. I think, in a wierd way, that Madeline is actually going to miss her Broviac when it's gone.
Friday, February 14, 2003 7:42 AM CST
Happy Valentine's Day
The last two days at home have been great for the most part. The girls are expressing interest in eating stuff like yogurt, pizza, cheese and chips. The yogurt is great because it replaces the good bacteria in the stomach to aid in digestion.
Yesterday we had blood counts done.
Madeline's
ANC 5353
WBC 10.1
HGB 11.9
Platelets 329 (wow!)
Hannah's
ANC 3010
WBC 5.8
HGB 10.3
Platelets 180
The Doctor said that we can start to reduce to the antirejection drug to hopefully get off of it soon. As soon as that one is taken off the list, two more will be removed that are taken only because they're on the antirejection drug. Then they'll be down to only two meds.
Madeline has only thrown up once since we've been home. Hannah has barfed almost every time she takes her meds. The one medicine smells like gasoline when spewed and I feel so bad that she has to take it again.
Both nights the girls have gone to bed in their own room only to migrate south to the livingroom with us before midnight. We don't mind it so much because it feels nice to cuddle with them not having to hop over the bed rails of a hospital bed.
Wednesday, February 12, 2003 10:15 AM CST
New pictures have been added.
Yesterday was Day +26: Going home day
The day started at 5am with the night nurse waking me and telling me that Madeline needed her Broviac repaired because it sprung a leak during the 4am blood counts. It wasn't tramatic and all of us were awake for the day. Madeline asked, "are we going home?", and I was pleased to give an affirmative response. Hannah spewed her morning meds and had to repeat them, yuck.
Going home counts:
Madeline
ANC 3760
WBC 7.9
HGB 10.6
Platelets 254
Hannah
ANC 3036
WBC 4.7
HGB 8.9
Platelets 170
After signing the discharge papers in the afternoon, Hannah literally was pushing me out the door. We got home at 3pm and Ethan was returned to us shorlty after. The first thing the girls wanted to do was to see their homemade quillows from their Aunt Kristine. The girls hugged Ethan and it was great to see everyone happy.
I feared, at times, that this day would never come true. It's so nice to hear all three of our children laughing together again. Thank you so much for all of your prayers and thoughts of kindness through this whole ordeal, they definitely helped us get through some of the rougher times.
Tuesday, February 11, 2003 9:00 AM CST
Yahoo! We're going home today. The girls are very excited and I'm sure I'll have a lot to write about tomorrow.
Yesterdays journal entry, Day +25:
Madeline slept 11 straight hours and Hannah slept 13 hours. For some reason, I only slept 4 hours, waking at 2am and not being able to go back to sleep. Madeline's ANC is 1602 and Hannah's is 4400.
Madeline attempted bacon and butter this morning with no success. If they throw up meds they have to be repeated, so Madeline told me that she had to repeat the bacon. Hannah told me that she had to barf this morning but I scared it back with the sight of an NG tube. As long as she hydrates herself, she won't have to get the tube placed. She drank all day without incident, and was able to be unhooked from her pole.
The girls wish list of presents arrived today and it must have taken many rolls of wrapping paper. They got a life sized Barbie that is literally bigger than them and they could share her dress. They also got a huge doll house for all of their normal sized Barbie's.
For dinner Madeline ate 2 bags of chips and Hannah ate a bite of a buttered roll and a few chips. Shockingly, they both kept it down.
I've noticed new freckles popping up on the girls. They're caused by the chemotherapy and radiation.
Tonight both girls got their biweekly dose of IVIG and were unhooked for the night. Hannah barfed her meds and had to repeat them. She fell asleep at 8pm and Madeline hung on until 11pm. I can't wait until tomorrow.
Monday, February 10, 2003 8:57 AM CST
Yesterday was Day +24:
Hannah woke feeling slightly sick today, but as of midnight, she has been fever free for the past 28 hours. Hopefully it's gone for good this time. Hannah's ANC was 7480, and Madeline's was 1736. Madeline's counts from the day before must have been wrong, what a relief.
For breakfast, Madeline ate what she did before all of the chemo, bacon dipped in butter. Unfortunately, it came back up an hour later. She's still unhooked from her pole. Hannah hasn't eaten anything today and isn't hydrating herself. She only vomited once this afternoon, yahoo.
They took a bath together and Madeline refused to get dressed afterward. She danced around and called herself 'the naked ballet dancer'.
Madeline ate beans and syrup again for dinner tonight. I'll have to buy extra syrup from the store when we go home. Hannah's dinner was a piece of hard candy. Hannah fell asleep at 6pm and after a second bath, Madeline fell asleep at 8pm. I can't remember the last time that they were both asleep this early.
Today Hannah told Stacie that she wanted to bring her bedroom down to the hospital so she can be in it. I think it's definitely time to leave now.
Sunday, February 9, 2003 9:34 AM CST
New pictures have been added today.
Yesterday was Day +23:
Hannah woke up vomiting and had a fever again. She barfed alot between 6am and 7am and, again, required 2 bed changes, it was deja vu. Stacie has been sick the past few days and wasn't allowed in the room. The first thing Madeline said when she woke up was, "I'm so excited that Mommy's coming today". Madeline's ANC dipped to 276 and Hannah's to 9540. Madeline's low ANC is concerning and if she has it for another day she may have to go back on some more antibiotics. There is some room for error in the lab, so it may have been a mistake.
Hannah spiked a low grade fever at 10am and was very cranky. She got some Tylenol and relaxed some. Madeline barfed at 11am and then played the rest of the day like she's never played before. Hannah slept the whole afternoon away and woke at 8pm.
Madeline ate her daily beans and syrup and ate a whole packet of ketchup. She also drank some iced tea and will be able to remain unhooked as long as she continues to hydrate herself.
They took a bath together after Hannah woke. Hannah got some more Tylenol at 8pm for a fever and both were asleep before 11pm. Hannah's fevers need to go away before we can finally go home.
Saturday, February 8, 2003 9:30 AM CST
Yesterday was Day +22:
Hannah woke at 4am with a fever and in the predawn hours between 5am and 6am, she threw up 7 times, needing 2 bed changes. After some antinausea meds she slept until after 11am and Madeline slept until a little after 10am, the longest they've slept in for a long time. Both ANC's dropped a bit today, with Madeline at 1428 and Hannah at 11107.
Madeline was unhooked from her pole today and as long as she drinks enough, she won't have to be hooked back up at bed time. She was in heaven.
The final results on Hannah's CAT scan came back with no infections. Great, but what's causing the fevers. We're still waiting for one more blood culture to come back. As a result of all of the vomiting and fevers, the nose feeding tube will be delayed.
Lunch didn't exist today for Hannah, with Madeline eating only a quarter of a french fry. Madeline drank some apple juice that was spewed after she was dancing and spinning around on the floor. There's nothing like my daily challenge of trying to catch projectile vomit into a small cup, I missed a little today. After the purge, she drank 12 ounces of gatorade.
Someone brought the gift of 2 buckets of snow for the girls to play with. The girls used my socks as gloves and tossed some of the snow around. Then they wanted to take the snow into the bath with them. They had a blast watching it melt.
For dinner, Hannah took a bit of meatball but didn't swallow it. Madeline ate a bunch of green beans dipped in maple syrup and she made me try it. It wasn't as bad as it sounds, but I wouldn't order it off of a menu. Madeline drank another can of orange gatorade and 2 ounces of pediasure which, in retrospect, was a bad idea. About an hour later, she vomited something resembling an orange creamsickle and was more than happy to hop back into the tub.
Stacie brought me some fudge on the last visit. When the girls asked what I was eating, I told them "fudge". They both told me that it was a bad word. They got that from the movie, 'A Christmas Story'. They found it amusing that I was eating a bad word. Madeline actually took a bite but wasn't too sure she was ready for it.
Friday, February 7, 2003 1:09 PM CST
Yesterday was Day +21:
The vomiting ran at hour intervals after midnight with Hannah. Madeline, still awake at 1am, asked me to lay in bed with her. She held my hand and whispered, "I love you, I love Mommy, I love Hannah, I love Ethan, and I love myself". She fell asleep shortly after and managed to be vomit free for over 24 hours. Hannah's ANC was at 12110 and Madeline's at 2695, great numbers.
This morning I asked Madeline if she wanted to eat breakfast and she said, "I'm empty, but I'm full". She has been taken completely off of the IV nutrition and IV meds. She started taking her cyclosporin, the antirejection drug, by mouth today and it smells like a skunk and probably doesn't taste much better. Hannah will be getting an NG feeding tube placed in the next couple of days to get nutrition once we go home. I took a class on how to reinsert it if, more like when, it gets barfed up.
In preparation for Hannah's CAT scan today she had an IV placed in her wrist for the contrast medicine. After it was in place, she said, all weepy-eyed, "why do I have to have an IV if I have a Broviac". I felt so bad, but the contrast dye is thick and we didn't want a repeat of another popped line. The initial reading of the scan was that there wasn't any fungas, but she would have to remain on the antifungal one more night until the scan could be more closely looked at the next morning.
Tonight for dinner, Madeline actually gave no fight on eating about 10 green beans. Hannah swallowed a piece of maple syrup covered chicken nugget and declared herself 'full'.
Bath time was funny and gross. While Hannah was in the tub, I took the old sheets off of the beds while Madeline talked to Hannah next to the tub. I made one of the beds and heard great laughter echoeing from the bathroom and when I looked in, Madeline was standing, with soaked PJ's, in the tub with Hannah. I took the PJ's off and let them take a bath together while I finished the beds. A few minutes later, Madeline said I pooped, so I ran in and had to empty the tub and rinse them off. Shortly after I filled it back up, Hannah did the same thing. So, again, I emptied and refilled it and shortly after heard one of them say "uh oh!". I ran in and they both said that the duckie pooped this time. They were laughing because they were pulling my leg.
We've been hit with the possibility that Madeline could go home before Hannah. We've also been given the option of going home together but don't know what to do. Currently, I think we'll do the in together-out together thing, with no girl left behind.
Thursday, February 6, 2003 12:01 AM CST
Yesterday was Day +20:
There were a few vomiting spells before 7am, but then we had 13 hours that were spew free. Counts were great today with Hannah's ANC at 10032 and Madeline's at 1749. Hopes of a Friday homecoming were shot down by Hannah's high fevers and a greater need for self hydration.
The whole afternoon was filled with pure happiness. The girls played in Madeline's bed and both drank 4 ounces of juice. Then the girls played and felt well enough to go venture to the playroom. We came back to the 'hotel' room and took really fun baths. Madeline cleaned Hannah's back while she was in the tub and they both played with their rubber duckie.
Before dinner came, they both agreed to eat something. Hannah took a bite of a chicken nugget and almost swallowed it, but then said no. She tried again on her own but didn't manage to swallow. Madeline refused to eat but wanted to play with bandaids to put on pretend boo-boo's, so I made a deal with her. Like we're in prison exchanging cigarettes for banned goods, I offered her bandaids in exchange for swallowed green beans. She ate only one but managed to swindle 8 bandaids, a good deal for the inmate. Both girls drank a fair amount of gatorade and Madeline ate some popcorn later in the evening.
Madeline has a new phrase, "for crying out sakes!". A cross between 'for goodness sakes' and 'for crying out loud'. I love the things that they say.
Hannah started with a high fever at 8pm, right around the time she started an antifungal medicine. Her little body started to shake uncontrolably from either the med or the fever and she was so uncomfortable. So much that she didn't even want to be held. The fury of her stomach opened up at 9pm and didn't slow until after midnight. She was given a medicine to stop the shakes and to comfort her and it worked relatively fast.
Wednesday, February 5, 2003 10:39 AM CST
Yesterday was Day +19:
The morning started just like all of the others, bodily explosions. Hannah's ANC was at 8484 and Madeline's at 2769. Both of their platelets are over 210,000, and as a result they can now brush with a real toothbrush because their gums won't bleed.
Madeline started to show signs of graft-versus-host-disease today. Her palms and soles look like they have a rash. It may get to a point where she'll need to take steroids to keep it under control. Hannah started with a fever again today and a CAT scan has been scheduled a couple of days from now to rule out a fungal infection.
The playroom was closed down so the girls could go play today. They played a few board games and Hannah is really good at Junior Boggle.
Madeline's cabin fever got the best of her today. While Stacie was here, Madeline covered herself in half a tube of vaseline. And even after a bath, she was still full of shine. When I came to the hospital, she covered herself in the other half of the tube, head-to-toe. The oil slick that it caused in the bathtub was enough to probably alarm the Environmental Protection Agency. Exxon is happy that the focus has been taken off of their accidents.
Tueday, February 4, 2003 7:21 AM CST
New pictures have been added.
Yesterday was Day +18:
The morning started with two cranky girls and the usual explosions from both of them. Counts looked great today, with Hannah's ANC at 4104 and Madeline's at 1551. Their platelets were above 185,000 (wow!).
The girls got their stitches out and now have small scars where the skin biopsy was taken from. They did fairly well for the removal.
The girls played with the music, art, and physical therapists today. It's hard to believe that there was time in between all of the vomiting.
Stacie had a 4pm British tea with Madeline and she actually drank some tea with cream and sugar. She also drank 4 ounces of apple juice, a good start. Hannah still is not taking anything by mouth.
There's talk that if everything goes as planned, Friday will be our day to go home (awesome!).
Monday, February 3, 2003 6:41 AM CST
Yesterday was Day +17:
It was an uneventful early morning from midnight until dawn with the exception of a 102 degree fever on Madeline that was gone before 8am. Hannah started the parade of vomits today right when she woke up. Blood counts looked great today, with Hannah's ANC at 5056 and Madeline's at 1122. I just wish that their blood counts reflected how well they felt.
Hannah's blood pressure was very high today and she was given a few medicines to tame it. A couple of hours later, the meds had to be repeated. It's possible that the hypertension is caused by the antirejection drug that initially rattled her brain. I hope the cause is identified soon.
The girls played together for a short time today. Because the girls ANC's are above 1000, they were able walk out in the hallway with masks on. We only did it because we were allowed, not because they actually felt like walking. It only lasted five minutes, but I know they thought it was great because they haven't been out of their room, aside from having a medical procedure, for 25 days.
Someday I need to go on the road with The Vomit Monologues(and other bodily functions). I have so many puke and poop stories from my children that are sad, gross, or had funny circumstances that I'm sure I could get an audience. Today, after vomit number five, Madeline asked, "why do kids vomit when they're sick?". I told her the reason she was spewing was that she was given medicine that will eventually make her feel well again. It must be a hard concept for a four year old to understand that we're making them sick so they feel better one day. Madeline took comfort in that her favorite, silly dog, Aspen also had an upset belly. Both girls barfed more than ten times each today, and when they vomit, it's also coming out the other end most of the time. Very rarely do they give me the pleasure of having to deal with both of them at the same time while they're getting sick. I was given enough warning today to avert total disasters on many of the spews. After the girls went to bed after 9pm, I thought I was in the clear but was visited one last time from each of the girls puke monsters. And as you can guess, no food today.
Sunday, February 2, 2003 9:00 AM CST
Yesterday was Day +16:
The girls vomited a few times from midnight until they woke up. Barf seems to be the routine wake up call every morning now. Hannah's ANC slid a little to 2744 and Madeline's climbed to 385. Both girls increased their own platelets for todays counts.
Madeline maintained her low grade fever and more blood cultures were taken to try and find out what's eating her. Her cough became more severe so a chest xray was ordered to see if there was any visible infection. Her cough was quieted with codeine as we waited for the results. The xray showed nothing and Hannah has the same cough, but only not as persistent.
I almost got Madeline to eat today. She put a piece of popcorn in her mouth, but didn't swallow it. That turned her off from food for the rest of the night. She told me she might try bacon and butter in the morning.
Like active volcanoes, both girls spewed lava without warning many times today, resulting in a couple of bed changes for Madeline. I'm considering investing in a seismograph to give me better than a 2 second warning on the next explosion. The vomiting is sparked by both nausea from the treatment and by the mucousitis. Even with all of the antinausea drugs, we had a hard time putting a damper on the eruptions. Hopefully tomorrow they'll be dormant again.
Saturday, February 1, 2003 7:27 AM CST
New pictures have been added today.
Yesterday was Day +15:
Hannah woke first this morning with an incredibly scratchy throat saying, "my voice, oh my voice", as if she were the Little Mermaid and Ursala stole it. She hit her morphine button and even though it has a lock-out on it, she squeezed it extra hard. Blood counts looked good this morning with Hannah's ANC at 3652(wow) and Madeline's at 108. Both girls platelets are climbing on their own and have never been as high as they are without having a transfusion. They woke on the wrong side of the hospital bed this morning and didn't come out of the funk until late morning.
Because I see Hannah every minute of every day, I didn't notice what her nurse saw, that Hannah was starting to look puffy. It's possible that it's fluid retention. Her nose was also a little bloody, maybe because the room is so dry.
Madeline is extremely sensitive to smells again. A few days ago she threw-up at the smell of the cleaner used in the bathroom. Today she expressed interest in what was on her food tray and when I brought it in, she pointed at everything that would make her vomit, and unfortunately the whole tray was fingered. We'll try again tomorrow.
Both girls played in Madeline's bed today, which is something they haven't done in a week because Hannah has been so ill. Hannah was laughing again today and finally got a chance to play with the music and physical therapists. Madeline now has some of the therapists songs memorized and was given a mic to sing into today. She sang some of her Disney favorites as the therapist played along with her guitar.
Today the girls got IVIG which is something they get once every 2 weeks. Both girls started to spike fevers near the end of the infusion which is not abnormal. Hannah's fever went away but Madeline's hung on through the night. Madeline started to cough earlier in the day, and I hope she's not getting the bacteria that Hannah had. The bacteria that Hannah had, strep viridans, could have had a much greater impact on her health, so I feel fortunate that she was only as sick as she was.
The girls have a nice advancing wind blowing as their counts climb, but will occasionally encounter turbulent or stagnant waters.
Friday, January 31, 2003 at 06:33 AM (CST)
Yesterday was Day +14:
Shortly after midnight, Hannah started to have a fever going the opposite direction, she was at 96.5 degrees. Her temp was normal in the waking hours of the morning and the previous temperatures were dismissed. Dispite how Hannah is feeling, her counts are great with an ANC of 2178 and actually showing a climb in platelets that could mean that she's producing her own. Madeline's ANC almost doubled to 60 from the previous day. We're told that it's nothing to worry about that she's lagging behind Hannah so much. Their Doctor told me something this morning that I made her repeat because I was in disbelief, the girls may get to go home as early as next week. Great news that I almost didn't want to write in fear that it won't come true. The girls need to maintain their own nutrition to go home, which might need the support of a nose feeding tube.
Hannah had a CAT scan today to search for fungus. None was found, so more medicines were taken off her long list. With her counts above certain amounts, she was able to dump even more meds today. I wish she felt well enough to enjoy her wonderful blood counts.
Both girls had it coming out both ends only 15 minutes apart from one another. I think it was a plot to take an early bath. Madeline sang one of her made up songs in the tub which truely is music to my ears.
Hannah came in and out of sleep today and was irritable when she was awake. While she slept, Madeline and I played and practiced speaking French. She knows all of her body parts and knows some important phrases, like 'can I go to the bathroom?'. She's also obsessed with speaking with a British tongue and and wanted to mix the two languages. What came out sounded very good, almost too good. Hannah was asleep before 8pm and I would've been with her, but Madeline hung on until midnight.
Thursday, January 30, 2003 at 07:01 AM (CST)
Yesterday was Day +13:
Hannah woke early with her "brain" hurting and had a vomiting spell that put her in the tub. Her constant flow of morphine was increased to keep her comfortable. The blood levels that came back today were amazing on Hannah. Her ANC was at 1278, which is close to normal, and her body can now fight off certain infections. Madeline's counts are a little sluggish with an ANC of 36.
When I entered the room to change gaurd with Stacie today, Hannah was sitting up in bed, which is something she hasn't done in 4 days. In just the 24 hours that I last saw them, I could see a difference in the way that they looked, missing some more hair. Now all that remains on their heads are a few long strands that were never removed by the very first round of chemo back in October. I don't know how they hung on. I got Hannah to laugh and smile and it was the best feeling. She even wanted to cuddle, which is something she hasn't wanted to do since she got sick.
The blood cultures that were done a couple of days ago on Hannah came back positive for strep. viridans. The antibiotics that she's already on will cover this type of infection. Hannah will be losing an antifungal med today and as long as her ANC stays above 200, she'll lose two oral antibiotics tomorrow, the ones that taste really bad.
Bath time was great fun tonight because Hannah is back to 'quacking' in the tub. Stacie bought her a rubber ducky that she loves to play with and pretends to save it from drowning. While in the tub she asked, "why do children have to stay at the hospital". I think in a way they think this is some kind of punishment.
Madeline really does enjoy her tickle time. Tonight it seemed to last forever. Kid laughs have the power to heal the body and mind. They should be sold as a prescription in a pharmacy. The warning label would read: Caution- may cause abdominal and facial tenderness due to constant laughing and smiling, and may cause an uncontrollable feeling of happiness. Enjoy often and in liberal doses.
Wednesday, January 29, 2003 at 07:34 AM (CST)
New pictures have been added today.
Yesterday was Day +12:
Today was a great day even if some moments of it weren't. Hannah has an ANC of 130 and Madeline's is at 10. The ANC, Absolute Neutrophil Count, is a measurement of how much infection the body can fight. This is the day that we've been impatiently waiting for.
Hannah still had a high fever and it was considered, at 4am, that a cooling blanket be used, but then it was decided that it really wouldn't cool her. At 12pm, her fever came down to 101.5 even before she took her regular dose of Tylenol. She came in and out of sleep and one of the times cried, "I want to go home". Hannah was very cranky and almost unconsolable, but after nearly 3 solid days of sleep and feeling extremely ill, who wouldn't be? By 4pm her fever was completely gone after 4 days of a high temperatures. She received transfusions of red cells and platelets today. A CAT scan has been scheduled for Thursday to see if they can locate the origin of Hannah's infection that caused so much grief.
Madeline was happy this morning, but fell into a funk this afternoon shortly after she had a vomiting spell. She was put on morphine for, what seemed, mouth pain. Madeline loves to listen to music and is constantly asking me to make her songs that she hears on the TV. We have now burned 3 CD's of their favorite tunes.
When the physical therapists came in today, Hannah struggled to get up to play. After she literally almost fell back asleep in the therapists arms and Madeline with her vomiting spell, it was decided that today wasn't a good day to play. The girls were very upset that it had to end today and couldn't understand why.
The results of the skin biopsy came back as a nonspecific rash, which I think is good because they don't have to put any additional medicine on or in them for it. The rash seems to be fading as the days pass.
The girls are finally getting their breeze which will eventually turn into a wind that will fill their sails and push them out of these doldrums.
Tuesday, January 28, 2003 at 08:53 AM (CST)
Yesterday was Day +11:
The happy/sad theater symbol belongs on our door to let people know what their about to walk into. They are at such opposite ends of the spectrum when it comes to how their each handling the treatment and the side affects. Hannah spiked an early morning fever of 105.2 degrees. Although Hannah is extremely sick, she had one monocyte counted during this mornings blood counts. This is the start of engraftment (yahoo!). Madeline still has no counts and I thought for sure that she would have before Hannah because of how good she was feeling. Madeline woke at 5am and wanted to watch a movie. She made it through half of it before falling back asleep until 10am. Hannah woke today only to use the potty and to take medicine. Her fever never went away today so she'll be put on another antifungal with hopes it will take care of whats going on inside of Hannah. I'm very worried about Hannah. The nutritionist is increasing the amount of nutients and lipids they get because Hannah has only maintained her weight, when the goal was for her to gain.
While Hannah slept today, Madeline played instruments with the music therapist and also listened to songs played by Woody, a traveling musician. Madeline requested all Christmas music: Rudolph, Jingle Bells, and Frosty the Snowman. Madeline and I played and she puked while laughing and then we went right back to playing again. Everyday Madeline does something nice for Hannah and today she made her a Little Mermaid window cling.
The dermatologists came in today and said the results of the skin biopsy would be back tomorrow, but he thinks it could be one of three things, graft versus host disease, a virus, or a reaction to one of the medicines. Speaking of medicine's, here's a list of what is going into Hannah today:
Acyclovir-an antiviral
Gentamycin-an antibiotic
Amoxicillin-an antibiotic
Vancomycin-an antibiotic
Ceftazidime-an antibiotic
Fluconazole-an antifungal
Amphoteracin-an antifungal
Cyclosporin-the antirejection medicine
Ativan-for nausea
Phenergan-for nausea
Benadryl-for nausea and protection against reactions to blood products
Morphine-for pain
Lipids in IV form
Nutrients in IV form
Tylenol-for fever and pain
Hannah's cyclosporin levels came back slightly low, so her dose was increased.
Madeline was feeling very cranky tonight and didn't want her nurse or myself to help her. After the nurse left, I asked her what was wrong, and with tears in her eyes she said, "I just want to go home".
Monday, January 27, 2003 at 04:53 AM (CST)
New pictures have been added and the journal entries for the past two days have been updated.
1-25-03 Day +9:
After midnight, early this morning, both girls were up vomitting just about every half-hour or so it seemed. Hannah maintained a high fever all night with Tylenol not being able to take the edge off. Hannah's first blood culture came back negative so she was able to stop one of the three added antibiotics. This morning Hannah complained that her "brain and throat hurt" and was given some relief with morphine. Today she will start a PCA which will allow her to add mini-doses of morphine when the pain from mucousitis isn't covered by the constant dose. I noticed some petechia on Hannah's face today which indicates low platelets, so she'll be getting a transfusion. Fevers tend to eat-up platelets very fast. It was mentioned that Hannah may have the flu.
Hannah stayed in bed all day. For some reason, Madeline was seeing butterflies in her bed and was afraid, so she moved to the green chair/bed for the the day. There she made a huge mess with glitter. I guess she thought the floor wasn't glimmering enough. I called to the hospital while I was home with Ethan and made Madeline belly laugh telling a story about Ethan in the tub. Hannah was too sick to listen to my voice on the phone and all I wanted to say was, "I love you".
1-26-03 Day +10:
It was a long early morning for Stacie, having to give Hannah a 3am bath. Hannah has maintained her high fever for a couple of days and her second blood culture came back positive for bacteria, so she was put back on another antibiotic. Both girls didn't have any cell counts yet, but I just know Madeline will be getting them soon by the way she's acting.
I got to the hospital a little before 11am to a very sick Hannah and an extremely happy Madeline who wanted to be tickled. Hannah's fever topped at 104 degrees and she was exceptionally irritable and uncomfortable. After she was given Tylenol, I stood with her in my arms and even though she initially resisted wanting to be held, she eventually was comforted by me. Madeline started to cry and said, "I want Hannah to feel better." She started to feel better as soon as the medicine got a chance to bring her fever down slightly, and she played for a few moments before falling asleep.
The smell of food usually makes them feel sick, but today Madeline wanted to see what was on the lunch tray. After her request to "get rid of the baked zitti and just leave the peas", she swallowed two bites. I was shocked that peas would be one of the first things that she'd want to eat.
Hannah briefly woke to see the beginning of one of the movies that we watched today and sang along with the opening music. It was nice to see her be herself, even for just a couple of moments. Madeline played patiently by herself today while I gave Hannah some much needed extra attention. When I asked what movie they wanted to watch tonight, Hannah replied, "I want you to pick". I can't believe, as sick as she is, that she'd even consider something that I want.
Friday, January 24, 2003 at 11:37 PM (CST)
Today was Day +8:
Turbulent is the best word to describe today. Hannah woke up with throat pain and received some morphine so that she could take her medicine in comfort. Hannah's 3pm MRI was bumped-up to 10am, which was nice because we usually don't have luck with punctuality for some procedures. Madeline expressed concern for Hannah before the MRI and said, "are you gonna say 'I love you' all the time when you get back?", like she did during the last sedation. Hannah put up a good fight against falling asleep and waved her hand in front of her blurry eyes right before the general anesthetics got the best of her. I waited back in the 'blue room' with Madeline during Hannah's 45 minute brain scan. While waiting, Madeline said, "can I watch Hannah's favorite movie, The Little Mermaid?". We started watching the movie when we were pleasantly interupted by the music therapist. Madeline played instruments and listened to the therapist sing. Hannah returned to the room dizzy and when she was a little more stable, I put her in Madeline's bed where she was greeted with a nice warm Madeline hug.
The physical therapists came in and played with the girls again. They make doing exercise so fun. Madeline's nurse painted both of their nails today and I know they love to do those girly things.
Their skin rashes, Madeline's in particular, were very pronounced today. Dermatologists were called in for a consult and concluded that they didn't what the rash was. The rash is atypical of any reaction they would have from the chemo or radiation and it's too early to be related to Graft-Versus-Host-Disease. A skin biopsy was ordered and both girls had a 4 millimeter hole cut out of them. Hannah cried a little but then watched as she received her stitches. Madeline on the other hand gave some resistance and cried the whole time and when her circle of skin was removed, she yelled at the Dermatologist, "that doesn't belong to you!".
Hannah's MRI results and anti-rejection drug levels came back late in the day. Good news on the MRI, no known brain damage. Bad news on the anti-rejection levels, they didn't come up to the needed amount and we have to switch back to the original drug. Hopefully now that we have Hannah's blood pressure under control, we won't have any 'quiet' problems.
Hannah spiked a fever after her bath tonight and was immediatelty put on 2 new antibiotics and then when Tylenol didn't take the fever away, she was put on an additonal antibiotic. Hopefully the blood cultures come back negative. Madeline's soles of her feet are slightly red tonight. Hannah's fever and Madeline's feet could be signs of engraftment and we could see cell counts very soon.
Tonight Hannah wanted me to cuddle with her, so I laid down with her. She explained that, "cuddling isn't laying next to me, cuddling is wrapping your arms around me." I held her tight. With the exception of a few moments, today wasn't the most enjoyable of days, so tomorrow I plan to make up for lost fun time.
Friday, January 24, 2003 at 06:51 AM (CST)
Yesterday was Day +7:
Hannah woke today with pain in her left ear, which is odd because it was Madeline's right ear the morning before. Neither of them expressed any pain the rest of the day. Madeline got her morphine dose increased because she was having some pain when swallowing medicines. The short hairs on their heads have started to present themselves on their pillows. There's so little left to lose that it shouldn't be traumatic, if they even notice at all. Madeline got platelets today.
When I came in today to swap with Stacie, it looked like the abstract impressionist, Jackson Pollock paid a visit to our room. There was splatter paint everywhere, the sheets, the table, faces and , yes, even on some paper. Their PJ's had a new design on them. They were being creative with paint filled syringes. A little messy, but very fun for the girls. The pictures I took won't do the mess justice.
The physical therapist came in and played red light-green light with them. When it was Madeline's turn to be still like a statue, she just wiggled and giggled. After some exercise, the girls took a musical bath to clean the Picaso off of their bodies. Their primary nurses then patiently cut out butterflies for the girls to glue together.
Tonight we started watching Harry Potter in hopes that it would wind them down. During a short intermission to take their nightly meds and to do mouthcare, the girls got a second wind, a wind of gale force magnitude. They tickled each other and laughed for a good half-hour. They were moving so much that I had a hard time getting a picture. It was nice to see them interact like that. They were both given anti-nausea medicine that knocked Hannah out pretty quick. I turned the movie back on so Madeline could finish it. The anesthesiologist came in at around 10pm to discuss Hannah's MRI scheduled for tomorrow. When he left, Madeline expressed concern for Hannah and asked, "why do they have to look at Hannah's brain?". I thought she was watching the movie and not paying attention to our conversation. They were both asleep before 10:30pm in Madeline's bed. They look so cute together with Hannah leaning against Madeline.
Today I turned 30. I hope my birthday wish comes true.
Thursday, January 23, 2003 at 08:39 AM (CST)
Yesterday was Day +6:
New pictures have been added today.
An early morning scream from Madeline was my rooster wake-up call. She complained that her right ear hurt. There was too much wax to see the drum, so drops were put in to remove the obstruction. She woke so early that she was able to watch the sunrise. As soon as she saw the sun, she fell back asleep for a couple of hours. Hannah had blood levels taken to see if the new anti-rejection drug is working and we'll find out results this afternoon.
I've learned that if they say their going to vomit, I need to put them on the potty at the same time. I've been able to avoid at least 3 baths with this method.
During this mornings baths, both girls were singing at the top of their lungs and loved the sound of their own voice. The people out in the hall could hear them sing. I think everyone enjoys the acoustics of a bathroom.
We continued with Fort Blue today while the girls had an hour of freedom from all of their lines of medicine. They do a special 'I'm free' dance every time they get unhooked, which isn't often these days. We again told stories and the girls made an attempt at eating, but only managed to swallow a couple of bites.
After we tore the fort down we played with Play-Doh. Madeline made Hannah a ten layer cake with lit candles on top.
Before Stacie came down to swap with me, we got some concerning news about the anti-rejection levels in Hannah. They are way too low and the infusion rate with be increased to hopefully compensate for the difference. The missed MRI has been rescheduled to see if there really was any brain damage from the first anti-rejection drug. If the levels don't increase by Friday, we may have to go back to the original anti-rejection drug. The anti-rejection level needs to be up and running soon so that there are no signs of rejection, which can range from very mild to severe. All of this medicine switching is making me extremely anxious.
Stacie continued with crafts and boardgames with no success at an early bedtime. The girls just seem to fight sleep because they think they'll miss something.
A few days ago, after some investigating, I was able to conclude that the stem cells came from either Germany, Switzerland, or Austria. The time zone of the collection site was on the stem cell sticker of the syringe. I didn't realize that there were 48 countries connected to National Bone Marrow databases. The stem cells traveled more than 4000 miles to their new home.
Wednesday, January 22, 2003 at 06:39 AM (CST)
Yesterday was Day +5:
The day started with Hannah's, now routine, bodily function explosion that lands her in the tub. She pretended to be a duck and answered my questions in 'quack' form. Madeline got jealous and insisted on an early morning bath as well. She pretended to be a frog. I woke this morning with a goal of keeping the girls occupied all day long so that bedtime could be before midnight.
I ran down to the kitchen for my morning tea and while I was gone, Madeline pressed the nurses station call button. I got back and was greeted with a voice on the intercom asking if everything was okay. I asked Madeline why she pressed it and she said, "I missed you and wanted you". I was only gone for 2 minutes.
After the Doc's made their rounds and the cleaning lady mopped the floor, I decided to make the biggest fort we've ever made. It covered half of the room and was tall enough for the girls to stand in. We played in, the appropriatley named, 'Fort Blue' for more than 2 hours. We started play time with a story telling game that I like to play with the girls. I start a story, then it gets passed to Madeline, then to Hannah, then back to me. Of the 3 stories told, all contained 2 princesses that went to Disneyworld and then traveled to a hospital to get "feel better blood", and Hannah eventually ended the stories with, "...and they lived happily ever after." I hope so. We then played with crafts and sang along to some of their favorite reggae music, which is, coincidentally, my favorite too.
After 'Fort Blue', the physical therapists came in to give the girls a half-hour work out. The girls love the interaction time with them. Hannah started to feel sick at the end of the session and had another vomiting spell. She felt better immediately after.
Then the art therapist came in and the girls made signs for their medicine poles that had their names on them. Madeline made a face for hers a few days ago and said that the IV bags were the poles hair.
Madeline has mastered the art of puking into a bucket and doesn't feel the need to vomit on herself or her bed. The girls love their baths, with Hannah taking 3 baths today and Madeline taking 2 of them.
Hannah's platelets were low today so she got some after she went to bed. But before she fell asleep, she vomitted some fresh blood. So even if her platelets weren't low, she would have gotten a transfusion.
Madeline fell asleep before 8pm and Hannah hung on til 10pm. Before she fell asleep she wanted me to lay with her. She sang the softest made-up Hannah song in my ear while playing with the scruff of my unshaven face. I think her goal was to lull me to sleep and it worked. I woke a half-hour later and made my way to the, oh so comfy, chair/bed. For the first time in weeks, I was asleep before midnight and the ubiquitous Energizer Bunny triumphed.
Monday, January 20, 2003 at 10:41 PM (CST)
New pictures have been added from the important stem cell day.
Yesterday was Day +3:
It was a late night last night, or an early morning depending on how you look at it. Both girls puked shortly after midnight and required baths. In, what the average person calls, the morning, I mentioned to Hannah that it was chilly outside. She said, with great question in her voice, "chili, like Mommy makes in a pot?". She immediatly laughed at her silliness. Another glorious morning of a back-to-normal Hannah.
Thanks to Aunt Kristine, Stacie and I were able to be with the girls through the initial rough times of the chemo and radiation, while she played and took care of our son, Ethan. With Aunt Kristine safely home with Uncle Greg and Aspen, the silly dog, Stacie and I will take turns playing with Ethan and getting some sanity time away from the 'blue room' of the hospital.
Madeline had a transfusion of platelets today because they were low. She hadn't had a transfusion of blood products for a whole month. Madeline complained of stomach pain today, probably due to the mucousitis, and was given a small continuous dose of morphine.
Stacie brought tons of craft things to do with the girls. They played all afternoon, making boats, flowers, and butterflys. The girls love to paint with glitter and I'm almost positive that if you entered this room a decade from now, you'd be able to find glitter from us. It's everywhere, along with tiny sequins that the girls paste on paper. The girls crafted until after midnight when Stacie finally decided to call it a night. The girls, without a doubt, could outlast the Energizer Bunny.
Today was Day +4:
Our friends, Lisa and Victoria, watched Ethan today so that I could trade places with Stacie at the hospital without having to bring him. Given that he couldn't have entered the girls room, it made for an easy transition. Thank you. The other day when we swapped, we had Ethan, and Hannah didn't understand why he couldn't come up into her bed. I think that they all miss one another even if some, or more than some, of the time at home was spent fighting.
Both girls are getting urine cultures done because they found trace amounts of blood in Hannah's, which is not abnormal for the treatment that they received.
Hannah had another vomit explosion that needed the remedies of a bath. During her oatmeal bath, that she called a "cappaccino bath", she was singing the Little Mermaid and picking up the undesolved oatmeal and calling it her "treasure trove".
After Stacie left, we all cuddled up in one of the beds and watched a movie. The girls then cut up pictures and taped them into their very own scrapebooks. While scapebooking, I noticed mild burn marks on their fingers and wrists, and on Madeline I noticed some on her neck. These burns are from the treatment and look like a rash. The girls also look somewhat tan. The girls stayed up until almost midnight again. At this point, the Energizer Bunny is trying to find a store to buy more batteries.
The 'honeymoon period' of the transplant ended a couple of days ago. To describe what is being felt and will be felt in the anxious days before the stem cells start working, I've come up with a nautical explanation. There's a place in the ocean that creates an uneasy feeling for people in sailboats. It's called the doldrums, a narrow belt around the equator where there is little wind, much less a breeze, to fill a sail to push a boat. Like our room, the doldrums are not completely devoid of activity and can have violent squalls, but the vast majority of it is calm. It's a frustrating calmness because all you want to do is sail. I can't wait for the stems cells to kick in so that my girls can set sail and leave these doldrums forever.
Saturday, January 18, 2003 at 10:00 PM (CST)
Yesterday was Day +1:
Hannah played in the morning and then got quiet again. Madeline was running on all cylinders and being very talkative. I think she felt as if she had to catch-up on time lost during the previous days. Hannah had another exam and the Attending Physician wanted an MRI done to rule out any hemoraging or trama. Hannah was taken off of the anti-rejection drug because it caused her to have high blood pressure which they thought could have contributed to her bizarre state of mind. The anti-nausea drugs were also stopped because those drugs play around with the brain and could sway the doctors findings, so we're dealing with a little puke.
After a nap, Hannah seemed a little more responsive so I started to give her my own exam. She was able to point to the body parts that I asked her to, but was unable to tell me her favorite color, which is something she normally wouldn't have to think about. I was getting more and more frightened as time went on. I asked her what the characters names were on the current movie and she couldn't answer. She was able to draw triangles, squares, and circles, but couldn't spell her name. She kept saying "Daddy" in a tone that sounded much younger than her age, like if she were 3 or so. I can handle almost any physical problem and expected many, but wasn't prepared for this psycological block from Hannah. I was afraid that there may be permanent damage. Later in the afternoon, she was looking at my journal and wanted to put the rubber band on it and said, "can you help me?". I asked her what she wanted help with but she didn't know how to verbalize it. When it became time for the MRI, they tried to sedate her but were unsuccessful with three different drugs. She was very dizzy but awake and responsive and unfortunetly she was required to be completely asleep for the 45 minute scan. She kept repeating how much she loved me and that she couldn't see because her eyes wouldn't focus. We went back to our room where she fell asleep so we decided to venture back over, but Hannah didn't remain asleep for long and we had to cancel the session all together. Hopefully tomorrow we can try again.
Madeline was great fun today because she was back to being herself again. Before bed, she wanted to be tickled and I loved seeing her giggle. Madeline expressed concern over Hannah being too quiet, they really do look out for one another.
Today was Day +2:
Hannah woke this morning as if nothing had happened, but couldn't remember not talking yesterday. She was happy and it made me overjoyed. While the Doctors were making rounds, the girls pretended to be cats and dogs and I don't think I heard anything but "meows and ruffs" for a half hour. They were my kids again.
Hannah didn't keep many medicines in her belly today. Her new anti-rejection drug has to be taken orally. It only took three tries for it to finally stay down. They both complained of mild throat pain today and I fear that the inevitable mucousitis is upon us, with mouthsores not far behind. Hopefully with the mouth cleansing regiment in place, the sores won't be as horrible as they were the first time. We're going to start seeing the latent effects of the chemo and radiation, so I guess our honeymoon days are coming to an end.
Hannah's MRI will have to wait another day because we couldn't be fit in. With Hannah showing no signs of trouble today, I'm not as anxious about having the scan done. With Monday being a holiday, it may have to wait until Tuesday.
Friday, January 17, 2003 at 11:04 PM (CST)
Yesterday was the real Day (0):
The morning started off great, with the girls both saying "good morning" to me in a happy tone. We're in a few day period known as the 'honeymoon', where the chemo and steroids are out of the system and they feel, oddly, great. We were told that the stem cells would arrive at the hospital at around 5pm and then would go through the cleansing process that takes about 5 hours. The girls were awake for only a couple of hours before they both took a long morning nap.
Shortly after lunch, and I only say lunch as a reference to the time because they really didn't eat, Hannah started acting wierd and the only word that came out of her mouth was "Daddy". She was looking me in the eyes as if she was trying to say something but it just couldn't clear the tongue on its way out. After she said "Daddy" about a dozen times, she finally got out "I love you". I wasn't too concerned at this time and thought that maybe she was just tired. She stopped speaking for several hours and had a hard time following directions with the art therapist. When given a snack, she made a mess with it like our 18-month-old son would, putting her fingers in the peanut butter. I could tell by the look on her face that she didn't understand what was going on. Some Doctors came in to do an exam of her and concluded that she would need a CAT scan and thankfully it didn't show anything, but it still didn't satisfy my peace of mind. Hannah took a nap and when she woke she was pointing at things and saying what they were and what color they were, the same way a two-year-old would, using one word answers. She still maintained her "Daddy" response with the I-want-to-tell-you-something-more look in her eye. I asked her to recite Fraire-Jacque and she had no problem with it, which is something I thought was wierd considering she couldn't give me much a minute earlier. After her bath she was the most pleasant and agreeable child I've ever seen, which is out of character for Hannah. She told me that she loved me every minute and still had that look in her eye that there was more to be said. Hannah's blood pressure is slightly high due to the anti-rejection drug and this could be the cause of her problem. We'll find out more tomorrow. While Hannah was being prodded by all of the hospital staff, Madeline was snapping her fingers and she told me that it would make the nurses and doctors go away. After everybody left, she said, "see, it worked". Hannah was given platelets as a precaution and got red cells earlier because they were low. This was her first blood product transfusion in almost a month.
The girls went to bed with IV's in their wrists because they feared that the stem cells would have a hard time going into their tiny Broviac lines. Hannah got her stem cells pushed in at 11:25pm and Madeline at 11:35pm. Each of them got roughly 7 million new stem cells pushed into them. I felt like a kid on Christmas morning. Thanks to an incredibly caring person, the girls have a chance at a healthy life.
Thursday, January 16, 2003 at 12:42 PM (CST)
Yesterday was intended to be Day (0):
We started this morning with the last day of radiation and it went just like all the other days, with Hannah very upset. I carried both girls back because they didn't want to sit in on the bed. Madeline's 'steroid talk' was very bad today and I can't wait til their both off of the drug.
The second and final radiation really stunk. We got a call to say that the technician would be ready for us at 2pm. We were punctual and arrived sedated and ready to go. We were told that it would just be a 15 minute wait. A broken machine, a fire alarm, empty promises, and an hour and a half later, they finally took us in. It made Stacie and I very nervous having our immunosuppressed children out with the general population. Hannah woke right before treatment for a quick potty break and then slept through the whole procedure. Madeline, on the other hand, screamed and shouted during the treatment and had to be instructed to stay still several times.
Hannah slept all afternoon and missed dinner. Madeline played with her new toys, but still remained aggitated.
The girls were supposed to get their stems cells today, but they haven't arrived yet. We're told that they're coming from far away and I'm so curious as to where their originating from. The Doctor assured me that their health won't suffer as a result of the delay. They'll only be receiving one more small dose of steroids immediatley before transplant.
Bath time was very fun tonight with Madeline attempting to splash me with water. She giggled the whole time.
Wednesday, January 15, 2003 at 05:39 PM (CST)
Yesterday was Day -1:
Again, the day started with early morning radiation. Hannah cried the entire time with Madeline very calm and, at times, annoyed with Hannah's screaming. The treatment, and more so, the steroids, have turned my sweet little girls into emotional fire balls. Every uttered sentence is whined or screamed and once it starts, there's nothing that can be done or said that will rectify the situation. We want our girls back.
Hannah looked at me and said, "I don't feel good." I asked her if it was her head or her belly and she said, "just me doesn't feel good."
Today the girls started taking Cyclosporin. It's a steroid that is as an anti-rejection drug that will help them accept the donors stem cells. They'll remain on the drug even when we go home.
Bath time put a smile on my face tonight. The girls laughed and played for the short while that they were allowed to soak their skin. It was right back to unhappiness while drying them off. I wish bath time could last all afternoon.
Tuesday, January 14, 2003 at 07:39 AM (CST)
Yesterday was Day -2:
The girls started the day at 6am with Total Body Irradiation. The trip over to the other hospital was odd as we went to the basement of this hospital and navigated through the underground maze that led to the radiation machine. If post-it notes weren't left on the walls directing us back, like bread crumbs to Hansel and Gretel, I'm sure we would have had a hard time returning. The girls were taped head-to-head in position and listened to their favorite music. They both cried for Stacie and me as we watched them on a monitor and spoke to them through a microphone. The radiation took about 15 minutes on each side.
Now anyone that enters the room, aside from Stacie and me, has to put on a mask to protect the girls from germs. When the girls leave to get radiation, they also have to wear masks. Madeline put one on her head and Hannah said she looked like a unicorn.
Madeline didn't eat lunch and Hannah's consisted of a few licks of ketchup and mustard that only stayed in the belly for a few minutes.
Shortly before the second round of radiation for the day, the physical therapists came in and turned the boardgame, Candyland, into a physical activity by making them stretch for the game pieces. They'll get therapy three times a week so that there's no muscle attrition.
The second radiation went a little better, with Madeline cooperating the whole time and Hannah crying for half of it and sleeping for the other half.
Hannah dry heaved and Madeline lost all of the contents of her stomach tonight. Madeline insists on throwing-up on the bed and herself and won't let me try to catch it in a bucket. She fell asleep on me after her bath.
Both girls started high dose steroids that could make them more moody than usual. We have two more days of radiation which I think is making them tired.
Sunday, January 12, 2003 at 11:02 PM (CST)
Yesterday was Day -4:
The day started with a very unkind 4am bath for the girls to rinse off the chemo. They started a new chemo today that requires that they urinate every 2 hours so that the drug doesn't get a chance to harm the bladder. Even with great anti-nausea drugs, vomitting is inevitable. They had a great appetite for lunch and ate more than I had ever expected.
The anti-nausea drugs made them really silly. They were doing unusual things at the same time, like putting their hands over their eyes and grabbing dreams out of their heads. Madeline's silliness turned into hallucinations where she saw a rainbow on my face and 3 white bandaids on my forehead. I had a bright yellow shirt on but Madeline saw it as a purple suit and she wanted to try it on and was confused when she grabbed for the imaginary suit when she couldn't get a grasp.
The silliness ended at 4pm with Hannah spewing a full belly. And shortly after 6pm Madeline took her turn. They both barfed only a few times over the next couple of hours. Right after Madeline threw-up, she said, "I don't want to be like this." Hannah looked at me and said, "Madeline and me are sick."
Their last bath to rinse off the first chemo was at 10pm tonight and they're happy about that. The every-two-hour urinations will continue for another 2 days to protect the bladder.
Madeline spiked a fever at 11pm and was given Tylenol and antibiotics as a precaution. Blood cultures were also taken and results won't be in for another 24 hours.
Today was Day -3:
Today was relatively uneventful. The late night pee's were bothersome for the girls. Today was their last dose of chemo before transplant. The only thing left is 3 days of radiation and steroids to suppress the immune system further. The girls didn't vomit at all today with the chemo.
The afternoon was spent singing along to their favorite music. For dinner they ate steak and I thought for sure that their appetites would be gone by now. They remained in a silly state of mind all day with the anti-nausea drugs.
Tomorrow at 6:30am the girls start radiation twice a day for 3 days. The radiation machine is set-up for only one person, but for the first time ever at this hospital, two people will be done at the same time.
Friday, January 10, 2003 at 10:00 PM (CST)
Yesterday was considered Day -6 (six full days until Day Zero, which is the transplant day). The previous night we let the girls stay up until almost midnight, stuffing them with food(candy, chocolate, soda) because Madeline had surgery the next morning and wouldn't be able to eat. We laughed and played all the way up to bed, I didn't want it to end. I spent the morning packing and feeling very emotional. Lyrics to songs on the radio were making me cry. It's an almost undescribable feeling knowing what your about to put your children through. Madeline was scheduled for an 11am surgery to repair her clogged Broviac, but wasn't taken until 5pm because it was busy. After they sedated her they told me it would be about an hour before they'd be finished, so I ran to get a quick bite to eat. When I returned fifteen minutes later, there was Madeline being wheeled back to her recovery room. Somehow the clogged line became unclogged, which was great. The only problem was that she was sedated before they checked her line. So she took a nice 3 hour nap, which I didn't mind and I probably should have joined her. Hannah and Stacie came over, and again, Hannnah was very concerned for her sister's well-being. Madeline came out of the sedation extremely emotional and difficult to console. Both girls started their first chemotherapy at 10pm. This type of chemo is secreted through the skin and can cause burns similar to a bad sunburn. Therefore, we have to bathe the girls every 6 hours and change all clothing and bed linens. Their first bath was at midnight.
Today was considered Day -5. The girls had a 6am bath and fell back asleep for a few hours. We had to remove their special rings today and it made Madeline very upset. They can wear them again in a couple of days. Madeline was still a little "woozy" today from the prior days sedation. Today was the second and last day of the chemo that can cause burns but we'll have to maintain baths for another 24 hours. The girls are still eating and full of energy and silliness.
Tuesday, January 07, 2003 at 11:07 AM (CST)
New pictures have been added today.
Yesterday the girls had a CAT scan and everything looked good. Madeline didn't mind laying in the big circle as much as Hannah did. To pass the time with Hannah I held her hand and drew invisible pictures on her palm with my finger. I told her to guess what I was drawing. After a few drawings she told me she that I needed a clean hand to draw, so she handed me her other palm.
Last week we went to the Princess' on ice show and the girls loved it. We had a beautiful box above the ice away from the germs down below. I think I watched their faces more than I watched the show. During intermission, the girls and their friend, Victoria, ate some pizza. I knew that when Cinderella came out that Madeline was going to be overjoyed, so I had my camera waiting to capture her happiness. Thank you to everyone that made it possible for the girls to see their favorite characters.
Two nights ago it snowed, the kind of snow that's great for making snowmen, so we bundled-up and ventured outside. Hannah returned inside to warmth shortly after going out while Madeline and I made a tiny snowman.
Today is one of only two days left before we return to the hospital to prepare for transplant. Thank you for all of your well wishes and prayers as we enter the most critical and important part of their treatment.
Thursday, January 02, 2003 at 03:27 PM (CST)
New pictures have been added today.
Happy New Year to everyone.
On New Years eve, Stacie, me, and the girls all toasted with sparkling apple cider and my only wish was for health.
About a week ago I put fake rings on the girls and I told them that if they could keep them on for three days without losing them, that I'd buy them real rings. On the 31st they got real gold rings and they're still on. I told them that if they feel sad, scared, or lonely, all they have to do is look at their rings and they'll know that I love them. I hope the rings give them the kind of comfort I want for them.
Today we left the house at 7AM for a bone marrow biopsy. It's the final biopsy of their own original marrow before transplant. They didn't need any transfusions before the procedure because their platelet counts were high enough. Everything went better than I expected. The only glitch was that Hannah was very worried about Madeline during her biopsy and that she saw Madeline being wheeled away with an oxygen mask on before her own biopsy. Hannah was eventually calmed before sedation thanks to the friendly anesthesiologist. Both girls woke-up happier than they ever have before from sedation. Usually they're very cranky and are hard to be comforted. They both drank juice and loved looking at each others little red tongues. We came home and the girls had a feast of butter on bacon. It sounds gross but they sure love it.
Friday, December 27, 2002 at 08:10 AM (CST)
New Christmas pictures have been added today.
The girls are doing well and haven't needed any transfusions for a week. Hannah has had an upset belly on and off but is still eating. Before we go back in the hospital in January, the girls will have a CAT scan and a bone marrow biopsy.
The night before Christmas the girls left cookies and carrots for Santa and his reindeer. Because we lack a chimney, the girls hung a special key for Santa so he could get in. Stacie read the girls 'Twas the Night Before Christmas', and then they went to bed. The girls woke-up to find a present for each of them under the tree in their bedroom. When the kids came downstairs they found a livingroom filled with presents. The next several hours were spent opening presents and gathering wrapping paper. The girls got everything they asked for and more. The dreams of a white Christmas came true on the 25th, a little messy, but white.
I wish that these last two weeks before transplant would slow down.
Sunday, December 22, 2002 at 08:11 AM (CST)
One new picture has been added today.
Last Tuesday we were able to come home. Before we left the hospital, the doctors wanted to test a sedation medicine on Hannah to see if it would work during their radiation. The first drug made her literally drunk and ridiculous, so they either gave her more of the same drug or a completely different one. It knocked her out for a few hours.
The next day Stacie took them back to the hospital to see some Sesame Street characters in the attrium. Then I returned with them the following day to get blood work done. I guess we just like the place a little too much. Hannah needed platelets and slept through the infusion while Madeline and I played. The nurse tried to get blood out of one of Madeline's tubes and it wouldn't give. The nurse put a blood thinner in the line to hopefully 'melt' the clot. It didn't release so Madeline went home with the thinner in it overnight. Unfortunetly the next day didn't give more promise and when we return on January 9th she'll have to have a new line put in.
I had to give the girls the shots that boost cells in their bone marrows at home for only two days. I'm glad it was only two days because one of the times Hannah said, after receiving a shot, "my poor little leg", in the saddest of voices.
Hannah has had some bad gas for a few days and I said something to her. She replied, "I caught a stink from the hospital."
Beth, Brian and Grace: Thanks for the visit, it really means alot.
If we don't write until after Christmas, we hope everyone has a wonderful and safe holiday.
Monday, December 16, 2002 at 06:32 PM (CST)
New pictures have been added today.
The girls blood counts started to rise a couple of days ago. The doctors started them on a nightly shot that helps to speed the production of certain cells in the marrow that will help them fight infection on their own. This round of chemo didn't go as horrible as I had imagined and I'm very thankful.
On the advice of someone that I think is special, I built the girls a fort with bed sheets. The girls had a ton of fun. We read stories with flashlights and pretended we were camping(see photo). Thanks for the idea Carolyn.
Two nights ago the nurses closed the playroom for Hannah and Madeline so they could get some sanity time out of their 'hotel' without the risk of getting infection from other people. We played for nearly an hour and it went way too fast. We grabbed some art supplies while we were there and made goop back in their room (a mixture of elmers glue and liquid starch that makes something resembling the blob that isn't messy in its' final state).
Stacie bought the girls scrubs so that they could pretend to be nurses and doctors (see photo). Their Primary nurses, Anita and Sarah, made the girls their own official ID badges. Another nurse, Lisa, got them their very own stethoscopes. I bought calculators for them since all of the nurses have them and the calculators also double as beepers. The girls pretend on their stuffed animals from Marilyn and the animals have pretend bones made by Theresa, another one of their nurses.
Stacie bought the girls a princess tree for their room. It has their favorite colors of pink and purple and is topped with a crown. Today Stacie and the girls decorated balls to go on the tree with a bunch of art supplies. Stacie brought down some of the story books from her childhood to read to the girls. They absolutely love us to read them to them and ask for the older books first. It's neat how toys and stories can span many generations.
The buzz is that we may get to leave either tomorrow or the next day and spend Christmas at home. Yippee!!!!!
Thursday, December 12, 2002 at 10:49 AM (CST)
New pictures have been added today.
The fevers only stuck around for a little more than a day. The first 24-hour blood culture came back negative, so they were able to take one of the antibiotics off the list of five. Hannah still has some nausea resulting in the loss of a meal. They remain in isolation and I think cabin fever makes an appearance a couple times during the day.
Hannah's few remaining patches of hair started to look like dreadlocks, so I asked her if I could cut them out and she agreed. They now look more identical to me than they ever have before.
Two nights ago I must have read the girls ten stories before bed. We turn off all of the lights and I let them each hold a flashlight so we can see the pages. I had hoped that it would make them sleepy, but it only made them want to stay up later. I'm going to bring more books because they had so much fun that night.
Last night when I came home with Ethan, I realized that our heat wasn't working. Thankfully it was still 70 degrees in the house when I found out. I called someone and they told me it was a doohicky switch or something. It was probably just the pilot light, but because of my inexperience with heaters, I paid the man $200. After only 10 minutes of work, we now have heat.
One of the local Ballet companies came by to visit the children. The girls were very excited to see The Sugar Plum Fairy and The Mouse King. When we get out of here we're going to take them to see it.
Sometimes our minds go sour and we start to think about the horrible things that could happen after transplant. After a phone call with Stacie discussing that we wouldn't know what we'd do if something were to happen to one or both of them, my mind wouldn't let go of the awful thoughts. Later that day, in the middle of a movie, Madeline turned to me and said, "is something going to happen to me?" Without me answering because it shocked me, she turned back to the TV as if she didn't expect an answer. This isn't the first time that they've read my mind and it gives me the willies when they do.
Tuesday, December 10, 2002 at 12:47 PM (CST)
I spoke too soon about the girls feeling well. Yesterday Madeline started with a low grade fever. Hannah decided to join in with a fever that put her on three more IV antibiotics. They soon put Madeline on the same added antibiotics, bringing the total to five antibiotics apiece.
While the fevers were on the rise, the girls were very uncomfortable and cranky. A care package from Aunt Kristine's Aunt Marilyn arrived in the middle of the fevers and it couldn't have come at a better time. The girls moods changed almost immediatetly. There was a picture of one her puppies on the return address label and Hannah said, "is Aunt Kristine's Aunt a dog?" This made us all laugh. Thanks again Marilyn.
Along with the comforting package, a traveling guitar player named Woody entered the room. He sang a few familiar songs and some Christmas favorites. The girls loved to listen to his music and actually sang along during some of the better known songs like 'Frosty the Snowman', and 'Jingle Bells'.
The girls appetites took a southward turn yesterday. The lunch tray had fried chicken on it and Madeline wouldn't touch it. I asked why and she said, "chicken is real, I don't want to eat animals". She said the same thing about the cheeseburger. All in one day she has become a vegetarian. I hope she changes back because she doesn't much care for vegetables.
Hannah has one small sore on her tongue and I just know that it's a sign of the horrible mouth sores that will soon infest her mouth. I hope that they don't get as bad as they did during the first round of chemo.
Saturday, December 07, 2002 at 06:23 PM (CST)
New pictures have been added today.
On Wednesday we had the blood counts done only to find out that we would be returning to the hospital that day. I didn't think their counts would drop that fast. We're confined to the same room we were in before. The girls were excited to return to the "blue room", as they call it.
It snowed the following day, so maybe it was a good thing that we beat the nasty weather and didn't have to drive in it. The girls wanted to go out in the snow and couldn't understand why they weren't allowed. One of the front desk workers, Jackie, brought them a bucket of the snow to play with. The girls put on socks as makeshift mittens and made tiny snowmen. The bucket of snow really brightened their day. Later that evening, Hannah looked outside and said that there were bugs flying around the lamp posts. It was just the snow being lit by the light of the lamp post.
Because of the snow, many of the hospitals other departments had a slow day. We were able to get many of the pretransplant clearances done including an echocardiogram, an EKG, a kidney function test, an eye exam, and a trip to the dentist to make sure there was no tooth decay. The only things left are a consult from the radiation department and a CAT scan to determine if there is any infection, but that can't be done until their white cell count comes-up.
The girls are nonstop playing with crafts and art supplies. They really enjoyed painting the windows(see photo) and making a mess.
Aside from Hannah having nausea and a few vomitting spells, the girls are feeling well. Their spirits are high and they brighten our cloudy days. The waiting is the hardest part.
Wednesday, December 04, 2002 at 06:23 AM (CST)
New pictures have been added this morning.
Yes, if you haven't heard, we made it home for another short vacation. The chemo will probably land them back in the hospital late this week or early next week. The only time either of them got sick was when Hannah threw-up the morning that we were leaving to come home. It was a very uneventful week and I'm not complaining. That's probably why I haven't written for so long.
Since we've been home, Hannah is back to the sensitive to smells thing. Last night as she was vomitting she made a point to identify everything that was coming up. When she was all done, she said "that was sick". She started eating almost immediately after the spew and returned to the throne a few times before finally keeping something down. She even threw-up the antinausea drugs.
Both girls have begun a regrowth of hair before this round of chemo knocks it all out. Hannah, for some reason, has been able to hold on to a few patches.
While in the hospital, Stacie showed Madeline how to set-up a chess board. After only seeing it once, she put it back together correctly. She even put the queen on the right color, which is something I tend to forget from time to time. Just to see if it stuck, I asked her to put it together the following day and it was no problem. Look out Bobby Fischer.
Today the girls are getting blood taken to see if they need any transfusions. We'll also find out a rough time that the girls will have to return to the hospital as a result of a low white cell count.
Bone marrow transplant has now been set for early to mid January. The original donor is unable to do the stem cell harvesting within this window, but another perfect match is still on the bench. I hope this one is a little more flexible.
Thursday, November 28, 2002 at 05:36 PM (CST)
New pictures have been added today.
Hannah got her wish. On the eve of our return to the hospital, Madeline accidentally stepped on Hannah's nose tube and it popped half-way out. I finished pulling it out and after Madeline realized that she didn't hurt her, she said, "ta da!". It was a good laugh and Hannah enjoyed the freedom that night.
Everyone in the hospital was happy to see them and the girls soaked-up all of the attention like sponges. The girl's only concerns upon arrival were that didn't want to get shots, and they won't for the first couple of weeks.
Hannah's Broviac redo was delayed by a day and was completed yesterday. She came out of the sedatives feeling drunk. In order for her to focus, she had to close one eye. At one point she was singing at the top of her lungs having the time of her life. It all changed this morning when she woke-up very sore and cranky.
Hannah sneezed while in the clinic a couple of days ago and got boogers on her chin. She came to me and asked me to clean the "achoo" off of her.
The past couple of days have been rough on me. I found out a day ago that a child I met had been overtaken by his disease and passed away. I talked to the mother everyday for a month while we were in the first time, and although I had only met him twice because he was in isolation, I felt like I knew him well. I knew the day would come that I would know someone who just couldn't fight any longer, but I sure didn't prepare myself for it. Although our situation has felt 'real' for quite some time now, it has just been taken to a much more stessful level.
On this Thanksgiving we have many people to thank. Today when I found myself feeling very down, looking at the world through dirty glasses, I made a mental list of the people that have been helping, praying, and just being there when needed, and it lifted my spirits just enough to know that the world is on our side. Thank you.
Monday, November 25, 2002 at 03:38 PM (CST)
New pictures have been added today.
Today was our last day at home before we go in for their second round of chemo tomorrow. Hannah got some platelets today in preparation for her surgery tomorrow. It was a nice break to be away from the hospital for ten days considering that they'll probably be in until some time in January or February.
A few nights ago I read the girls the classic Suess, Green Eggs and Ham. The next morning they told me they wanted green eggs and ham, so I pulled out the dye from the cupboard and whipped-up some green eggs. They've never liked eggs before but they ate it all off their plate. Their palets have changed quite a bit since we've been home. The girls have both started liking cheese again and Madeline will eat mashed potatoes, which is something she never did before.
A couple of nights ago Hannah, with her eyes filling up, started ranting about everything she didn't like about her nose tube. She explained that it hurt when she ate, it made her sneeze, she didn't like not looking like everybody else, it made her not perfect or beautiful, and finally that it wasn't fair. I agreed with her and told her that soon it could come out as long as she ate enough. Hopefully she eats enough while we're in the hospital so it can be removed.
Wednesday, November 20, 2002 at 05:39 PM (CST)
New pictures have been added today.
I spent the last two days catching-up with Ethan. It was so nice to bond with him since I really didn't have a chance over the past month. We went to the mall and shared a hot dog and his first sip of rootbeer. We managed to squeeze some toy shopping in when he took a little snooze.
The girls are still doing well. Tomorrow they're getting more blood taken to see if they need red cells or platelets. I'm pretty sure that they'll need one of the two. I found out yesterday that Hannah will be entering the hospital a day early to have her Broviac reinstalled.
The girls seemed to have changed some since this all began, some for bad, but most for good. Their moods and patience have changed for the better, but I think that the constant gifts and attention have spoiled them to some degree. I guess if they're going to be spoiled, there's no better time than now.
Monday, November 18, 2002 at 06:33 PM (CST)
Me and the girls spent most of the day at one of CHOP's satelite offices getting a platelet transfusion. If you're ever given the option of going to a satelite office, do it, we must have been only one of about ten patients for the day. We have to have blood counts done every few days since they're not producing all of their own blood components yet. Every day they both take antibiotics to keep most of the bad bacteria away, so far the antibiotics are doing their job.
Hannah can now discontinue her nightly booster shot as her counts are out of the danger zone. She let out a "yee haa!" with the news of no more daily needles. Her hair must be stuck in with crazy glue because she still has quite a bit of it.
Madeline must not hate the hospital too much because this morning she said, "I want to go back to the hospital to play crafts". I told her that we could do anything she wanted to at home, this satisfied her. Today she came to me and said, "why did you pull out my hair and make me look like a boy". They sure know how to make you feel bad.
Some more thank you's:
Thank you to Christin and Matt, our neighbors and friends, for organizing a raffle that raised over $5,000 to benefit the girls expenses not covered by insurance.
Thank you to The Picture People for being so understanding and supportive through this whole ordeal. I couldn't work with a more caring bunch of people.
Saturday, November 16, 2002 at 10:22 AM (CST)
New pictures have been added.
Yesterday began with Madeline waking up and immediately saying, "are you packing up so we can go home". I was able to say "yes". After Hannah went to her CAT scan and was cleared for not having any fungas, they gave them both the okay to go home. We'll be returning on the Wednesday before Thanksgiving to do the second round of chemo and then finally the transplant. Hannah will have a new Broviac installed in light of the previous days fiasco. Everything with regard to the Hannah's mishap was handled very well and the hospital reassured us that all the neccessary steps were taken to insure that this will never happen again to any child.
We came home on the 15th close to dinner time. I had to give Hannah her shot that the nurses normally gave, she did alright. We have to go and get blood tested every few days just in case they are in need of a transfusion.
I'll update the journal a little more frequently now that we're home.
Thursday, November 14, 2002 at 10:25 PM (CST)
After many requests, sometime in the next couple of days, I'll be posting a picture of the girls cutting my hair.
Both girls had a bone marrow biopsy today to see how things are going. Preliminarily, the doctor said everything is going as planned, but we'll get more results in a day.
Madeline has been eating very well and tells us that she's hungry(It's like music to our ears). Yesterday she ate a full breakfast and lost it due to the consistency of one of her medicines. I tried to catch it all in a cup, but she insisted on vomitting on the floor and her feet. She finally spit the last bit in the cup and said, "thank you". Madeline's blood counts are high enough that we're told she may get to go home tomorrow for about a week before we get ready for transplant. It will make a nice break. Tonight I joked with her and asked her if she wanted to dip her french fries in vanilla icecream, she did and she liked it, try it sometime. Tonight she is sleeping untethered to her IV's and is loving every moment of it.
Hannah's progress is somewhat more slow, as she isn't eating or drinking. Her blood numbers are significantly lower than Madeline's, but that could change almost overnight. As a result of the fasting, during the bone marrow biopsy, the doctor inserted an NG tube into her nose and down into her stomach. When she awoke from the procedure, she sneezed like crazy and was quite annoyed by the tube. While's she's asleep, we'll push pediasure into her so she can soon be unhooked from the med's. By the time Hannah is ready to be released, she may only spend a few days away from the hospital.
Today Hannah had a scheduled CAT scan to see if she has fungas growing in her. We had to wait this long because the scan will only pick-up infection where white blood cells are present, and she didn't have many until today. The goal was to find out that there was no infection so we could take her off of the antifungal medicine that was causing uncomfortable reactions. As she was laying in "the big donut", the CAT scan tech tried to infuse the contrast medicine into one of the two barrels of her Broviac line. The tech seemed to have some difficulty with it because it wasn't going in. I mentioned to her that if she pushed too much harder, it was going to burst. She, as you can guess, didn't listen to me and completely blew-out the tube. Then she clamped the barrel off below the explosion, causing Hannah's blood to leak out of her. She was definitely batting a thousand. To top it off, I was told that she was not even authorized to "flush" medicines into patients. My anger prompted an incident report and hopefully a nice repremand. I was trying to be an advocate for my child by speaking up, but it didn't get me anywhere. The end result was that Hannah had to endure laying still through, not one, but two Broviac repairs because something didn't bond with the first one. Additionally, Hannah had to take the antifungal an extra night because we were unable to do the CAT scan due to the healing time of the repair. There aren't enough words to describe my digust in that individual. Unfortunetly for the lab tech, Hannah is going to have another try at the CAT scan tomorrow, I hope she brings her appologies to work.
A few thank you's: Thanks for all of the cards, gifts, and Emails of support, words mean so much. Thanks for the fun visit from Lisa yesterday, the girls and mom & dad enjoyed and needed it. A special thank you to Kristine who is flying back to Colorado on Monday after watching and playing with our son, Ethan, for (2) whole weeks.
Tuesday, November 12, 2002 at 12:22 AM (CST)
Finally, I was able to put new pictures on the photo page, so please look.
Hannah hasn't spiked the extremely high fevers for a couple of days, but the Doctors are still concerned. They did a nasal cavity vaccuuming rapid test to see if she had RSV or influenza. Luckily that came back negative. She had no reactions to the antifugal drug until last night at around midnight. Her entire body shook and the screams were nothing that I've ever heard before. After about (3) minutes of dopamine, she was back asleep without any discomfort.
One side of Hannah's Broviac line stopped up and caused quite a bit of trouble because she's on so many medicines that they have to use both sides. So they had to ween her off some so that she could get others. Finally, after twenty-four hours, it gave way and I don't think I've seen a nurse more excited.
Both girls are now off morphine for the mouth pain and I actually got them to start eating food. Madeline saw some nail polish and said that she wanted to be silly and paint my nails. So I told them they could each paint a nail for every bite of food they took. Ten painted nails later, I got them to eat a couple of tater tots and some ham. The nurses found it very amusing when I asked them for nail polish remover.
The girls hair may have only a few days left before it's all gone, so today I bought some clippers so that they could give me a trim. They each took turns having fun running the trimmers over my head. Hannah didn't want me to go completly bald because she said she'd be affraid, so I have about a millimeter of hair all over my head. As soon as theirs is all gone I'll ask them again if they'd like me to lose it all. I think it has made Madeline more comfortable with her hair loss. Hannah, I think, is in denial and will have a much harder time with it. Hannah's hair is falling out much more graceful than Madeline's.
Saturday, November 09, 2002 at 07:26 AM (CST)
Two days ago it was deja vu with Hannah in the morning, vomitting with a high fever. The Doctors are concerned that they can't find the origin of the fever, so they put her on an anti-fungal drug. The drug generally has some unpleasant side effects, but Hannah hasn't shown any of them. The only reason that the Doctors are using the medicine is because, he says, "fungas can make us lose the battle". Both girls have been getting platelet transfusions because they're dropping well below the accepted level.
The last (2) days have, for the most part, been very good. The mouth sores are almost nonexistant and Madeline was actually able to eat a few tablespoons of icecream. The hair loss isn't negatively affecting them yet and they still tell me they're going to take me up on the offer to shave my head once they're bald. There was so much hair on the floor that Madeline named it. She called it her imaginary pet dog, Harry. The bananas are still getting alot of use and have been transformed into eyebrows, smiles, mustaches, earings, and the, oh so popular, phone.
Two nights ago, Hannah mentioned home for the first time, she said, "I want to go home in my own bed at home". The girls both call their room "a hotel".
For most of the day they both like to sit in one of their beds and play together. I love it because I haven't seem them interact like sisters for about (3) weeks. Something very unfortunate happened yesterday while in Hannah's bed. While Madeline was leaning on the rail, that was supposed to keep her from falling, it gave way, sending her head first to the floor. Despite myself, a friend, and a nurse standing close by, she hit. I immediately picked her up and her first response was, "I'm sorry, I'm sorry". She was holding her head and I noticed where on her arms and shoulder she hit. The next few minutes seemed like a scene in the T.V. show E.R. Two residents and seemed a bunch of nurses surrounded the bed, listening to her heart and breathing, checking her pupils, feeling her head, and asking her questions. Everything seemed okay, and just as the doctors were starting to leave, one of the nurses insisted on doing a CAT scan of her head, and the Doctors agreed. Thankfully the scan came back normal, and the Doctor said that all he could find was some ear wax in one of her ears. This could have proved itself fatal if her platelet count was down where it was (5) days ago. They gave her platelets as a precautionary to help any possible boo-boo's that they were unable to detect. I hope this incident prompts the hospital to organize some kind of inspection of their beds, and they may already be doing it, but this one was certainly overlooked.
Wednesday, November 06, 2002 at 08:21 PM (CST)
This morning at 5AM I was awakened by Hannah vomitting with a fever of 105.5F. The fever quickly broke with some tylenol but she spiked that high again around lunch time. Speaking of lunch, both girls lost it three times today. They seem to act like nothing happened moments after each spew. Since we're not eating the food, Madeline and I decided to play with it and pretend the banana was a phone all afternoon while Hannah slept. They both had a few tablespoons of gingerale today.
Madeline still periodically has the odd heart sound. To our relief, the EKG and echocardiogram showed nothing out of the ordinary. It still bothers me that the cause hasn't presented itself yet. They'll just keep a close eye on every day.
Hannah's raw lips are starting to get alittle more back to normal. Today a piece of skin from her lip found itself in her mouth and she said, "I have a lip in my mouth". We simultaneously laughed at what she said and enjoyed being silly for about (5) minutes.
The girls were just given a shot,(the first needle in over two weeks), that will give their bone marrows a boost and hopefully make them produce the necessary cells quicker.
Last night while on a short visit to the playroom, Madeline looked out into the attrium and noticed a star swaying from the huge art piece hanging from the ceiling. She then said,
"Daddy, I see a star, I wish to go home". My eyes couldn't suck-up the water fast enough with that one.
Tuesday, November 05, 2002 at 01:39 PM (CST)
Today is day (14) in the hospital. Last night both girls spiked fevers and Hannah topped out at 104F. They started antibiotics until we find out if the blood cultures come back positive for infection.
Hannah's blood count came up alittle today, I hope that when they check it again tomorrow, it remains the same or climbs. Madeline is going to get another red cell transfusion today.
This morning Madelines nurse noticed a "Gallup" sound in her heart. The doctor said that it may be that she's retaining to much fluid, so they gave her medicine to clear it out. We just came back from getting a chest xray and are waiting for an EKG. The doctors don't seem to worried about the odd sound.
The girls are both very sensitive to smells. When food enters the room, the both tell us to throw it away. Today it actually made them both vomit. I guess Stacie and I will eat outside from now on.
Today was the first day that I noticed some hair loss. It was on Madelines pillow and she was very bothered by it because the static was making it hard to remove.
A few times during the day both girls have a brief moment of happiness. They'll smile and laugh and be the girls I knew (3) weeks ago. I look forward to these times and I'm saddened when they're gone.
We got some wonderful news on Sunday regarding a possible bone marrow donor. They may have found a perfect match, a (6) out (6). I hope that this finding is true, but they are going to test the blood further to be absolutely certain.
Monday, November 04, 2002 at 11:33 AM (CST)
The girls mouths are starting to look and, I think, feel better. Hopefully they'll want to eat or drink something soon. Over the past (2) weeks, both of them have had several platelet and red cell transfusions. To make it less stressful, the transfusions have different names: Patelets, which are orangish, are called 'orange juice'; Red blood cells are called, simply 'red medicine'; fatty acids are called a 'vanilla milkshake'; and the vitamins and minerals are called 'lemonade'. The girls are taking a much needed nap, that's how I have time to write. Thank you so much for everyone's nice words in our guest book. I'll write more later today.================================== We would also like to thank Bens brother Greg and his wife Kristine for caring so much that Kristine is fying in from Denver for two weeks to help with Ethan so Ben and I can be at the hospital to comfort and care for our girls. Also our neighbors and friends Lisa,James and Victoria Cobb for being so kind and caring for Ethan when Kristine goes back to Denver.
Friday, November 01, 2002 at 06:13 PM (CST)
I don't know where to begin about the girls health, so as to update people that aren't informed, I'll start with their birth on March 18th, 1998. They were born (7) weeks early, Madeline at 3lbs 15oz, and Hannah at 2lbs 11oz. Madeline stayed at the birth hospital until she weighed enough to go home about (4) weeks later. Hannah was transported to another hopsital after day (2) because they found that she had a coarctation of the aorta, and it required surgery. The Doctors reluctantly did the operation before she had achieved the ideal wieght for the surgery, regardless it was a great success. Hannah was reunited with her sister (2) months after their birth.
In the first year of their life they had nearly a dozen ear infections and had been put on just about every possible antibiotic. Finally to reduce the infections, the Doctors put tubes in their ears and it made a huge difference. The girls also had digestive problems that required medicine and special baby formula that must of been made in a vat lined with gold and diamonds. In addition to the other infections, the girls seemed to always have dry itchy skin that would be infected with staph. So we covered the girls from head to toe in steroids and skin creams, and sometimes their skin seemed better than others.
Sometime around their 2nd birthday (I not quite sure), we had some blood drawn that indicated that they had low platelets. The next (2) years were filled with Doctors visits, needles, prescriptions, and of the cries of both girls and their frustrated parents. The girls blood was tested for some very diseases, and they all came back negative. Finally in July of this year, they did a bone marrow and lymph node biopsy just to see if the girls were producing the correct amount of platelets and red and white blood cells. What they found was an abmormal cell growth and it was determined to be a kind of pre-leukemia called myelodysplasia. Treatment for this disease is a couple of rounds of chemo therapy and finally a bone marrow transplant. We started the chemo almost (2) weeks ago and are now in an isolation room dealing with the most horrifying mouth sores and an overall feeling of helplessness. This is the first time in this hospital that their going to do a transplant on identical twins. The girls have a permanent line into thier body, called a Broviac, that they infuse medications and nutrients. They won't have to feel the prick of a needle for a long time(there's something positive in this whole mess). They haven't eaten for over a week because of the mouth sores.
When Stacie and I brought Hannah and Madeline home from the hospital we didn't think we'd be returning.
Friday, November 01, 2002 at 06:58 AM (CST)
We just opened this web page and we'll begin adding stuff later today that I hope will inform everyone that cares about Hannah and Madeline
Thursday, October 31, 2002 at 07:07 PM (CST)
This page has just been created. Please check back for additional updates.
Click here to go back to the main page.
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