Journal History
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Wednesday, September 8, 2004 6:23 AM CDT
Thank you all for continually visiting Emily’s site and leaving such loving words and prayers. Also, thank you for the Happy Birthday wishes for Emily. Both Kathleen and I read your emails and entries in the guestbook. It’s amazing to still see that so many of you continue to think about and pray for Emily. Emily is truly blessed and we are so guilty for not updating her site more frequently. We just returned from Duke for Emily’s follow-up, so I thought this may be the perfect time to update Emily’s site (plus all the coffee I drank is keeping me up).
Yesterday, Emily had her third annual follow-up visit with Dr. K and Sue. As before, she is doing medically wonderful with only slight gains physically and psychologically. Her labs and tests came back all normal (knock on wood). She even grew 4 centimeters (1.5 inches) since last year. This was a surprise because she really hasn’t grown since transplant. We hope this is a sign that all her cells are back to normal and there is no need for growth hormones (no more needles). We are, however, still waiting for the results of the growth hormone testing from Georgetown Hospital.
We continue to seek help with her psychologically. Emily started seeing a new psychiatrist since January. There appears to be a good rapport between them, which has led to improvements in Emily’s depression/anxiety/post-traumatic stress symptoms. Emily was prescribed Luvox for depression and anxiety. The Luvox seems to have improved her affect. She is much happier. See the recent pictures I uploaded, especially the picture above on the left. This was taken shortly after Jack sprayed water all over Emily face in Disney World. To me, this is the closest reminder of how she was before the transplant …no before cancer. She wasn’t just smiling for the camera to make me happy. She was just happy.
Kathleen took Emily to a behavior psychologist who worked with Emily one-on-one over the summer. Emily is more aware of herself. She tries to sit up straight, and be more open and attentive when spoken to. The next step is to get her into the right social-behavior group with her peers, 10 year old girls. (Is learning to be catty at 10 years old a good thing?)
As you can see from the pictures, we ended the summer by spending a week in Disney World. Unfortunately, or fortunately (depending how you look at it), our kids were sick of Disney after one day. They preferred the hotel’s pools and slides over Disney World. Emily seemed to enjoy the meals with the Disney characters (3rd time for Emily; 1st time for Jack), but Jack was horrified. To him, Mickey was a giant RAT. It’s my fault. All he knows are Thomas the Train Engine, fire engines, cars, trucks, and animals. Those are the only stories I read to Jack. I soon realized that we should have gone to a petting zoo. Even in the Magic Kingdom, Emily and Jack were more interested in the real ducks than Donald Duck. But, they did enjoy the out door rides, especially Jack. He loved the trains and cars.
The hotel, we stayed at, had four parrots in the lobby. One of the parrots was named Merlot. (See photo.) Emily and Jack became very fond of Merlot. Both woke up every morning wanting to go down to see him. Because Merlot could say a lot of words, I think Jack was convinced that Merlot could carry on a conversation. Jack would say things like, “Do you like my shirt Merlot? How are you? My name is Jack. Can you say Jack?” And Merlot was so funny. If you ever speak to Kathleen, ask her to imitate Merlot. You will agree.
Besides our vacation to Disney, we went to Las Vegas over Spring break. We spent most of the time, where else, at the hotel’s pool. We saw the MGM lions up-close, and Jack and I viewed a Nascar IMAX 3-D film. We had a good time, but will never go again because of constant reminders that most gamblers smoke (they smoke a lot).
We spent the Fourth of July week at Smuggler’s Notch in Vermont with Kathleen’s family. It was chance for Emily and Jack to spend some time with their cousins, aunt and grand parents. Plus, it was a good break for Kathleen and me because, a day before, I had my cast removed from my left ankle.
In May, I attended a medical conference in San Francisco. Three hours before my flight home, I slipped on the granite steps leading to the subway, and fractured my left ankle in three places. Ouch! After the ER doctor stabilized my left ankle, I took the red-eye the next night and had surgery a few days later. I’m now the owner of two plates and eleven screws.
Emily and Jack started school last week. Emily attends a new school with a LAD program that provides smaller class size. She seems anxious about school. Hopefully, that wears off. Jack, on the other hand, likes his preschool. His class room has Thomas the Train Engine set in the middle of his classroom. Need I say more?
Thanks again for visiting.
-John
Monday, January 5, 2004 6:28 AM CST
Happy New Year everyone!!!! I hope you had a restful, peaceful and happy holiday! It is January 5, 2004 and over two years since Emily's transplant at Duke. As you can see from the new photos, her bright smile is flashing and she is having much fun with Jack. We visited my parents in Indiana over the holidays, celebrated my mother's birthday (Happy Birthday Grandma Jennifer!), ate A LOT of food, visited with a good friend from the past (Wonderful to see you again Stephanie!), made many new year's resolutions (the first time I have done this seriously), and relaxed. We spent close to two weeks with my parents and it was great to just do nothing but roll with the days.... I forgot how amazing that feels.
Emily continues to improve. Medically, she is doing wonderful. Physically, she is getting stronger each day. Psychologically - we are working on it and it has been the most frustrating and greatest struggle for us. We have taken her to numerous doctors with no improvement yet. I am determined to find a way to help her with her depression/anxiety/post-traumatic stress and this is the year that we will do it! I know it. School is very difficult for Emily and she is struggling with math and reading comprehension. (Unfortunately, this is also affecting her depression and anxiety.) We are now working with an educational consultant and intend to really improve her situation this year.
Emily is still enjoying her puzzles and drawing all the time. She spends more time chasing after Jack and trying to keep him out of her things. Jack loves to "help" her with her puzzles and is now also interested in drawing - although Emily's love of drawing flowers, rainbows, little girls, and butterflies has not rubbed off on him as his pictures consist mainly of trucks, cars and planes! :) It makes me smile every time I see the two of them together - they can be so sweet and loving to each other. Thank you God for these days.
Work has been insanely busy for me, and I hope that this year will be better. John started working for the FDA a few months ago and absolutely loves it. I apologize for the LONG delay in updating the website - will try to do better this year. :)
We continue to pray for all the children (and their families) undergoing cancer treatments and transplants - that the children will survive with minimal GvH, minimal eating troubles, minimal pain, minimal side affects from medications and great health. We also pray for those families that have suffered losses. May this year bring happy days for us all.
Kathleen
Friday, August 22, 2003 1:00 PM CDT
Hello everyone! School starts next week. Hooray! (I feel like the guy in the back-to-school Staple's commercial: "It's a wonderful time of the year!") Anyway, I think Emily is eager to go back to school. She attended Grace Episcopal Day School's summer enrichment program this summer and enjoyed it very much. I believe having a familiar teacher (her first grade teacher, April McDowell) who really understands what she has gone through helped. April also came up with a really great idea to distract Emily from picking at her nails. April gave Emily one of those new fad yo-yos, with the liquid filled ball at the end. It seems to provide enough distraction and amusement.
In preparation for school, we also went down to Duke last week for Emily's 2 year post transplant studies. (I can't believe it has already been 2 years) Emily had her annual diagnostic tests such as chest x-ray, echocardiogram, pulmonary function test and labs. Then we waited to see Dr K and Sue. It was a very long wait since so many patients were there. Hopefully, most were there for their annual check-ups, too. We did meet a very brave and happy little two year old girl, Haley, who was preparing to undergo her transplant. It brought back those uncertain memories 2 years ago as Emily was going through the same. My thoughts and hopes are with her and her parents. When we finally saw Dr K, she assured us that Emily's labs were all normal but since Emily hasn't grown for 2 years we may want to check her growth hormone levels. Dr K also suggested that more frequent counseling is recommended for Emily. I am assuming that it's more post-traumatic stress syndrome rather than OCD. We are starting Emily on something called Biofeedback training, tomorrow.
In addition, Emily had her IV access port removed Monday at Georgetown Hospital. She was so scared about the procedure, but afterwards she seemed just fine. She did complain of some pain after the surgery but that was expected. The surgeon was also able to remove the 2 nasty scars near the port placement. We hope this procedure reassures Emily that she is getting better and the leukemia is no longer in her body.
It was Emily's birthday last Saturday. She is 9 years old now. We spent the day with my pharmacy school friends and their family at a local water park in Virginia. Emily enjoyed eating nachos and ice cream,but wasn't really excited about the park. Jack, on the other hand, was like a kid in a candy store. He loved riding down the water slides all by himself and enjoyed splashing water at me. Emily still wishes for a pet, but neither Kathleen nor I are keen about the idea. Perhaps a kitten in two or three years may be okay.
We thank you for visiting Emily's website. Sorry for becoming so complacent. I promise to post some recent pictures of Emily soon.
John
Tuesday, June 17, 2003 7:28 AM CDT
Hello everyone!! I am so sorry that it has been a while since the last update. Life has been busy for us with changes in my job and John's job. First, the most important news - Emily's test results come back from Duke and the numbers were all good. Yay! :)
This is Emily's last week of school and I am happy to say that she is unhappy about it. She says that she will really miss Ms. Kaplan (who has been so emotionally supportive of Emily) and Ms. Gilbert as well as her friends. I love to hear this (although I don't want her to be sad). We were really blessed this year with her teachers and the compassion that they have shown Emily. At their recommendation, she will continue to summer school because she is really struggling with math and reading comprehension. I wish I could give her some magic potion to make her mind work better for her. I know the intelligence is there; she just cannot seem to access it. I worry at night sometimes about what her ultimate limitations will be and hope that I will be around for her whenever she needs me.
We have been meeting with a new psychiatrist and are trying different medications with the hope that we can help Emily with her OCD. The first try was a disaster. She could not stay awake and kept falling asleep in class. Apparently, there was one day when they could not wake her up! The good news is that the drug was working and she was getting better from it. Unfortunatly, it was probably because she was sleeping and drowsy all the time. We are trying something new now and pray that it works. Meanwhile her body is confused by all the changes and her OCD is really flaring up. Please pray with me that we find the right drug and doctor to help her.
Physically, Emily is doing better. She played soccer with John and Jack last week and did a great job dribbling the ball down the field. I have frequently been taking her out to run errands with me in order to force her to walk and become more active. She REALLY does not like going shopping and tries to avoid it as much as possible (boy, her future husband is going to be very happy with me).
Jack is doing great. He is growing very fast and becoming rather aggressive about his wants and needs. He loves parks; any kind of truck, bus or plane; saying "no!", "don't know" (while shrugging), "please" (while pouting or batting his eyes), "where?" and "I do!"; taking baths; other kids; reading books together; dancing; and most of all, Emily. We are going to start him in day care in a few weeks because I think he needs the social interaction. He loves to play with other children and it would probably be good for him to be in a structured setting with many playmates his age.
Well, that is all the news for now. Thank you for continuing to check on Emily and for the wonderful guestbook entries. We love reading your guestbook entries and hearing from you. Bye for now.
Kathleen
Tuesday, April 22, 2003 1:24 PM CDT
Hello everyone! We returned from our 18-month visit at Duke last week and it was great to see Dr. K again. We should be receiving Emily's immune study results in a few weeks. Overall, Emily is progressing medically and that is good news. Also, the tests show that she is still 100% donor cells and that is wonderful news. One new issue that did arise is that she has not grown in 1 1/2 years. There is a good possibility that she will have to start taking growth hormone injections (daily) until she reaches puberty. The news was a bit hard to take at first but have adjusted to it now. We will be returning to Duke in August for her 2 year testing and evaluations. (Actually, it will be 2 years in October but we needed to start before the new school year.) We are hoping to remove Emily's port before school begins. Strangely enough, she is distressed about this - I thought she would be happy to have it removed, but the idea of surgery is (understandably) really upsetting her.... Also, Dr. K urged us to find her a good psychologist/psychiatrist ASAP. The problem is that I have been actively searching for some time and it has been very hard to find one that effectively treats OCD and trichotillomania. There is no question that Emily really needs the help; one look at her head and her nails (or lack thereof) and anyone can see it. Between school/homework and meetings with the physical therapist, occupational therapist, speech pathologists, oncologists, epidemiologist, psychologists and psychiatrists, it is not surprising to me that Emily is tired and anxious. It is a lot for an 8 year old to deal with, but she is a trooper. Her energy level continues to increase and her smiles are back. John has stopped working on Saturdays and this has made everyone happier as we now have more time to spend together as a family.
Jack will be 2 on the 24th of April! He is very much a boy (EXTREMELY active and playful, and cannot have enough trucks and cars). He can be a little rough with Emily but happily gives her a hug or kiss when he realizes that he has hurt her. Currently, he is imitating everything that Emily says and does. She is tired of it; he can't get enough of it. :) He has also gotten comfortable using the potty and, if he forgets to use it, he just removes his diaper when he is finished! What a little helper. :)
Thanks for checking in on Emily.
Kathleen
Monday, March 10, 2003 8:16 AM CST
Hello everyone! Emily is about the same and we are scheduled to visit Duke in April for her 18-month follow-up. Wow - 18 months! Her appetite continues to improve and so does her energy level. Her physical therapist has also noticed great improvement. For the first time in months, the whole family went out for dinner on Saturday. I had forgotten how good that felt. Emily ate very well and was a trooper; Jack was a handful. He kept saying "no way" throughout dinner and screeching. (He is usually not like this... really...) John and I finally decided to let him "cook" his food so that we could eat in peace. Two weeks ago, Dr. Kurtzberg was in town attending an FDA Advisory Council meeting on licensing cord blood. I had an opportunity to speak at the meeting and also learned some interesting facts about cord blood (and bone marrow) transplants. It was amazing to be in the room with leaders in this field and to see the survival statistics. I also had a chance to see Herb Lee (angel Andrew's dad) and some of the other parents from Duke again. That was probably the best part of the meeting.
For those who are interested, there was an article in the New York Times on 1/8/03 on the late effects of chemotherapy and radiation on our children's cognitive/educational development. It is an interesting article, though many of you (like myself) are probably familiar with this information. Also, for those of you whose children have been on high-dose steriods for an extended period of time (and are therefore at higher risk for osteonecrosis), I found a good website on this medical condition: http://www.arthritis.org/conditions/DiseaseCenter/osteonecrosis.asp
Thanks for checking in on Emily.
Kathleen
Monday, February 17, 2003 9:42 PM CST
Hi everyone! Well, we are in the middle of a serious snowstorm. D.C. was hit with 16 inches and our area has about 2 feet of snow. It is beautiful outside. The snow is so high that we can barely see our mailbox. Emily and Jack obviously love it and I am enjoying my day off. John almost had to go to work this morning because he is considered "essential personnel" but by the time he shoveled all the snow out of the driveway and called in, he did not have to go.
I attended an IEP meeting for Emily last week and it went very well. The teachers and staff at her school continue to be helpful and proactive. I asked for a speech/language evaluation a few months ago after researching some of the educational issues that Emily has been having and the results are finally in - it seems that Emily has mild to moderate cognitive reasoning and processing deficiencies and that speech and language intervention will be helpful to her. She should be receiving these services at school once a week, along with her OT and PT. I am very hopeful that given the right tools, she will be able to fit in academically at school. Despite the speech/language eval, I know that she has come a long way and am thrilled with the progress that she has made so far. She has also made some friends at school and is now truly a part of the classroom community.
Emily's health is the same. We are scheduled to go to Duke in April for her 18 month checkup. She had a fever a few days ago and because she still has a port in her chest, we had to call Georgetown about the fever. Thankfully, the fever went down on its own and I just had to take her to the hospital the next day for observation. For a few minutes, I had flashbacks of our visits to the ER in the middle of the night when she was so sick with leukemia and the chemotherapy. Then I snapped out of it. :) Jack was also pretty sick for a few days. He had a fever of 102. Because of what we have gone through with Emily, I suppose that I don't get as worried about certain health issues anymore. Thus, I did not even think twice about Jack's fever; I just gave him some Tylenol and assumed it was the flu. That was a mistake - he has strep throat. (Needless to say, I felt like a heel when I found out that he was really sick.) The good news is that both Emily and Jack are much better today.
A dear friend treated me to a day at the spa for my birthday last week. That was a wonderful treat and so much fun. Emily and Jack gave me a sweet card, John and I went out to dinner at my favorite restaurant and I allowed myself the luxury of feeling stress-free for the day. That was nice.
Jack is saying MANY words now and his favorite words are "cool" and "video." Emily is very proud of him since he learned them from her. He is also having some loud temper tantrums. I guess this is what they call the terrible twos. His mood constantly swings from content and happy to frustrated and angry. The problem is that half the time I have no idea what he is upset about and that makes him even angrier. Emily keeps asking me what is wrong with him and if we can sell him. :)
Thanks for checking in. Bye for now -
Kathleen
Tueday, February 4, 2003 7:24 AM CST
Hi everyone! It seems to get harder to update as frequently as I would like. The good news is that Emily continues to improve. (big smile) We have weaned her completely off of the FK506 (anti-gvh medication) and hopefully will start to wean her off of the rest of the drugs soon. This is happy news for us and we love telling her that she is getting better. :) It also means that we will going to Georgetown for more frequent visits to monitor her counts and gvh levels, but that is an inconvenience that we don't mind living with. We still don't know for certain why her hair falls out (it is definitely not directly from any medications) but I suspect it has something to do with the side effects she experienced from the toxicity of the cyclosporin. She is steadily gaining her weight back and does not look so sickly thin anymore. Her memory has improved slightly too and so has her strength. It is a SLOW process and I am learning much about patience. I am also happy to report that she is eating better. She still resists drinking anything other than Sprite but we are working on this, too. We have found a new psychologist for Emily (unfortunately, she is not a neuropsychologist but she came highly recommended). I hope that she connects with her -- we miss Dr. McCabe terribly. She really understood Emily and enjoyed her time with her. Knowing how much Emily loves puzzles, Dr. McCabe gave her a book filled with pages of puzzles as a goodbye gift. Emily has a lot of fun with it and still asks about seeing Dr. McCabe.
Jack has graduated from the crib and is now in a car bed. He is much happier about this and loves to run out of bed, turn on the light and play with his toys/read his books, instead of going to sleep. He also runs out of his room and starts calling for dada or mama if he wakes up at night. I am sure of how to put a stop to this but am working on it.... John is doing well and working hard. I am working some crazy hours at the office and do not see the kids as much as I would like. I think the stress level at this job is a 9 out of 10, but my colleagues are great.
On a sad note, Joanne passed away a few weeks ago. Please say an extra prayer for her parents, Joe and Anne, and her little brother Christopher.
Thank you for checking in on Emily. Bye for now --
Kathleen
Friday, January 10, 2003 at 06:29 AM (CST)
Happy New Year! We spent a fun and quiet new year's together. For the first time in years, we had a white Christmas and it was wonderful. Emily and Jack helped make a snowman and had so much fun doing it.
Life seems to keep getting more "interesting" -- Emily is losing her hair again; we don't know why and she is sad about it. I am hoping that it will grow back (I don't assume anything anymore). We think that we have found someone to replace Emily's neuropsyhologist and hope that she will be able to help us to help Emily cope with her physical change. Emily is still being weaned off of her medications and doing well with this.
Jack is growing up so fast and he and Emily have started to play with each other. Their favorite game? Run away from me as fast as you can without running into something.... It is great to watch them laughing together. Jack has started using the potty although I think he is confused on when he is supposed to go to the potty. (He tends to run over to it AFTER he has already gone to the bathroom...) Emily hurt her back last night and started wailing. Jack heard her crying and ran to the kitchen, grabbed the First Aid kit, and brought it to Emily. I had two thoughts -- first, that what he did was so sweet, and second, that it is scary that he knows where to find the first aid kit. :)
Kathleen
Monday, December 23, 2002 at 02:03 PM (CST)
Merry Christmas everyone! Wow, what an amazing year it has been. We feel so blessed to have Emily here with us and celebrating this holiday together. She continues to improve- slowly but surely, as they say. We see more smiles every day and she is more and more energetic. Thank you God! She is still going to Georgetown and Duke for follow-up care but I really like that safety net. Her fantasic neuropsychologist is unfortunately leaving and I am working hard on trying to find another one for Emily. (any suggestions out there for a good replacement?) This is difficult for Emily because she bonded so well with Dr. McCabe and we really saw some great progress. I hope to find someone as caring and understanding. Emily is continuing to be weaned off of her anti-graft vs host disease medications and steroids. This will also take a while but I am getting better at waiting. :) (Patience has never been one of my strengths but I seem to be improving . . .)
Jack is growing so fast and keeps us young with his wonderful personality. I think he and Emily will really enjoy this Christmas.
Thank you all for staying with us on this journey. It means so much to us. I think of all the children (Andrew, Matthew, Morgan, Michael Allen, Cassie, Sarah-Morgan, Kevin, Shannon, Darryl, Reggie, Sydney, Mauricio, Jonathan, Charlie, Salama, Brandon, Quentin and so many others) who did not survive their transplants or diseases and their families who are living through the holidays without their little ones. I pray they find peace and strength. Lastly, please join me in saying an extra prayer for Joanne Pang. Her website is listed at the bottom of this site and you can read her update on "Letters from Home." Her prognosis is not very good and the leukemia has made its way into her blood stream. Please pray with us that the donor cells will win the war against the leukemia and that her body will be strong enough to survive the battle inside. As I say my prayers for Joanne, I feel as though I am praying for my own child. God heal her please.
We hope all of you have a HEALTHY, happy and safe holiday. May you have many blessings and lots of laughter (and few tears) in 2003.
John, Kathleen, Emily and Jack
Monday, December 02, 2002 at 07:58 AM (CST)
Hello everyone and Happy Thanksgiving! We have been so blessed and are thankful for your continued prayers for Emily and support. It is hard to believe that this time last year, we were in the transplant unit at Duke and fighting for her life. Sometimes it feels like yesterday and on other days it feels like years ago. Emily had a nice holiday and enjoyed her days off from school. :) She is feeling better and has had more energy lately. Her teachers at school and her neuropsychologist were mentioning to me that they have also noticed a difference in her endurance and spirit. She has also been more active lately and will be starting physical therapy at school once a week. I think this may also help with her endurance. She is getting very excited about Christmas and the wish list grows daily. We have not gotten a tree yet but hope to find one this weekend. Emily will love decorating the tree; Jack will love taking the ornaments off the tree. This should be interesting.
I heard some very sad news today and ask you to please say a special prayer for Joanne Pang. I have mentioned her in my entries before when she was very sick in the Duke transplant unit. She recovered from those complications and the nurses in the unit call her a miracle child.
Unfortunately, she has had a major setback and is in need of prayers. I have added Joanne's mother's journal entry to the end of mine so that you could read about her current condition. (I am sorry that I don't have her website.)
Thank you for checking in on Emily. We continue to pray for those families in the transplant unit, the children who are struggling with this terrible disease, and the families who have lost their little ones, especially Andrew Lee's family.
********************************************
Dear Friends:
With great sadness to report Joanne’s lung is inflicted with Leukemia. Less than a week since the last scan, a lump, the size of egg grew under her left arm. The CT scan showed it is growing both directions, towards the chest wall and inside the lung. Biopsy obtained on Wednesday under general anesthesia. It looked like leukemia. Pathologist report due on Monday to indicate for sure what it was. Fortunately her bone marrow aspirate is clean. Cellcept, the immunosurpressent was stopped immediately to induce graft to fight off the bad cells. In addition, doctors recommend radiation to reduce the mass. We’ll be waiting anxiously the result of cultures from lung wash.
It is truly worrisome the disease came back this soon after transplant and attacked the lung. It was already sick with fungus, virus, bacteria and now Leukemia.
She has been suffering severe nausea and tummy pain. Benadryle IV is the only thing works. She’ll be rolling and howling soon after the effect wore off and it wore off quickly before the next dosing time. Vomits many times a day, particularly bad in the morning. So much for a little innocent kid to endure. She blamed herself. She felt guilty for causing family chaos. She tried her best to gasp the situation, try to be good, it is just not fair.
Prayers, prayer, please. Where we all fail, Lord guide us.
Anne
Tuesday, November 19, 2002 at 05:55 AM (CST)
We are happy to say that Emily continues to improve. Her weaning off of the anti-gvh medications has been successful so far (other than for the occasional flare-up of rashes, dry skin and stomachaches). She is enjoying school more and wrote in her journal on Friday that "I am happy because I am at school." :) I think that is a wonderful sign. I met with her educators on Thursday re her IEP and included our educational specialist (whom we are extremely happy with). The meeting went well and we have another meeting scheduled for January. Emily will be starting physical therapy soon and occupational therapy (indirectly). We are still looking into trying to find her private PT and OT as well, but that is taking some time (insurance company has denied it; apparently she is only entitled a small number of visits IN HER LIFETIME for her condition). As a side note, on days when I deal with the insurance company, I seriously consider changing my specialty in law and taking them on - - I think it would be incredibly gratifying. (I suspect that I sound a little frustrated; I am sure that those of you who have had to fight for the most basic and essential medical benefits for your children can understand this.)
Emily has already decided what she wants for Christmas. Actually, she has known for about 6 months now. She is pleading for a puppy or kitten. (yikes!) I am sure that Jack would just love another being on which to shower his "affections" and Emily would be thrilled to have a "cuddly, fluffy, cute kitty or puppy," but I don't look forward to the extra chores. At least not yet anyway.... (Emily can be very very persuasive.)
We went to a stable last weekend and Emily had a chance to groom a pony. She enjoyed herself but got very tired toward the end and started wimpering and crying. We left early. Jack, on the other hand, enjoyed himself the whole time. Between sticking his fingers inside the pony's nose, trying to grab onto its eyelashes, petting the horses, chasing the dog around the barn and "talking" to the barn cats, he had a fantastic time. :) Jack is "talking" a lot now and using sign language to supplement his babble. He is also getting a bit too affectionate with Emily and I am often pulling him away from her. He is also a pro at imitating sounds and movements and LOVES his cars/trucks/planes/helicopters. He gets excited when he sees a truck, fire truck, police car or ambulance and is constantly looking (and asking) for them when we are in the car. Once he sees one, he starts making siren noises.
Thanks for checking in on Emily.
Kathleen
Wednesday, November 06, 2002 at 06:25 AM (CST)
As a follow-up to my last update (below), it breaks my heart to report that Andrew Lee passed away. He was a very special child with a wonderful personality and strong spirit. Please remember his family, especially his parents and little sister, in your prayers.
Monday, November 04, 2002 at 12:18 PM (CST)
Hello everyone. Emily continues to improve. The immune studies have returned and show that her immune system is getting stronger and more "normal." We have started to wean her off of the anti-GvH drug that she has been taking, and hopefully will be able to decrease her other medications too. She is getting bored more often now which is a wonderful sign and her energy level is slowly increasing, too. Yesterday she thought of something really funny and she gave me one of her 1,000 watt smiles. I have not seen that smile since her transplant. What an amazing thing to see again. She has started taking art classes and loves them, and has also moved onto 500 piece puzzles. :)
Thank you to everyone who contacted me about Emily's educational needs. I am working with the school system and trying to get the appropriate accommodations for her. Your advice and information were extremely helpful.
Finally, please pray for Andrew Lee. He is from Maryland and the same age as Emily. He also went to Duke for his transplant (in April). He was doing very well and came home for a few weeks, but is now back at Duke in the Pediatric ICU. He is very sick and really needs prayers.
Thank you for checking in on Emily. I will update again soon.
Monday, November 04, 2002 at 12:18 PM (CST)
Hello everyone. Emily continues to improve. The immune studies have returned and show that her immune system is getting stronger and more "normal." We have started to wean her off of the anti-GvH drug that she has been taking, and hopefully will be able to decrease her other medications too. She is getting bored more often now which is a wonderful sign and her energy level is slowly increasing, too. Yesterday she thought of something really funny and she gave me one of her 1,000 watt smiles. I have not seen that smile since her transplant. What an amazing thing to see again. She has started taking art classes and loves them, and has also moved onto 500 piece puzzles. :)
Thank you to everyone who contacted me about Emily's educational needs. I am working with the school system and trying to get the appropriate accommodations for her. Your advice and information were extremely helpful.
Finally, please pray for Andrew Lee. He is from Maryland and the same age as Emily. He also went to Duke for his transplant (in April). He was doing very well and came home for a few weeks, but is now back at Duke in the Pediatric ICU. He is very sick and really needs prayers.
Thank you for checking in on Emily. I will update again soon.
Tuesday, October 22, 2002 at 06:48 AM (CDT)
Hi everyone! Emily was in a wedding this past weekend. My brother-in-law got married and she was the flower girl. She looked so cute in her dress and was a trooper (despite the fact that she wasn't feeling well). The most memorable moment for me was when she was walking down the aisle. Before her big moment, she had a bouquet of flowers in her hand and asked me why there weren't any petals to throw on the floor. I told her that perhaps it would come later. It didn't. So Emily decided to fix that and as she was walking down the aisle, she started shredding and tearing apart the roses in her bouquet and throwing them on the ground! She came up to me later and was so proud of herself for pulling off the petals. She said that she tried really hard to pull off as many petals as possible but that it was not easy because they were "really stuck." I started laughing when she told me what she had been doing and she insisted that "was the way it is supposed to be done." :) Medically speaking, we have not received the lab results from Duke yet and will let you know once we have some information.
Right now, Jack and Emily are battling a cold. Jack thinks it is really interesting to have this strange liquid coming out of his nose and likes to inspect it. (I am constantly running after him with a kleenex and wiping down everything he has touched.) Emily is a little more distraught over her cold. I suppose that she may always be more sensitive about getting ill. We are working on helping her to feel "safer" and less anxious.
Bye for now...
Wednesday, October 16, 2002 at 06:10 AM (CDT)
Hello everyone. Emily continues to improve. :) We have started to wean her off of her anti-GvH medication and hope that we don't see any serious graft v. host disease. Her appetite is the same and she seems to be sleeping better at night. Her spirits are generally improving although I am sad to say that she REALLY dislikes school. She is having a hard time with math as her short-term memory issues are interfering with her ability to grasp basic concepts. I am extremely frustrated as I have so far been unable to find effective help for her. At this point, Emily's self-esteem and confidence are waning, and I see her anxiety and frustration whenever we open her math book. I am puzzled by the lack of resources, and have been told by other parents with children with special needs that lawsuits are the only way to get effective help. If anyone out there has advice for us, please let me know.
Jack is still very active and is babbling all the time. He loves to "talk" and I think he is convinced that I can understand him. He is also getting very good at pushing toys and furniture together to reach objects. I am often finding him on top of the kitchen table. Also, his favorite books are now about trucks and animals. Emily and Jack have started to "play" together (which means that Jack follows Emily around the house and copies what she is doing).
John is working hard and I am now at a new job. It is too soon to tell what will happen with both of our jobs.
Bye for now...
Tuesday, October 15, 2002 at 06:15 AM (CDT)
Hello everyone. Emily continues to improve. :) We have started to wean her off of her anti-GvH medication and hope that we don't see any serious graft v. host disease. Her appetite is the same and she seems to be sleeping better at night. Her spirits are generally improving although I am sad to say that she REALLY dislikes school. She is having a hard time with math as her short-term memory issues are interfering with her ability to grasp basic concepts. I am extremely frustrated with the Mont. Cty. school system as I have so far been unable to find effective help for her. At this point, Emily's self-esteem and confidence are waning, and I see her anxiety and frustration whenever we open her math book. I am getting really angry about the lack of resources, and have been told by other parents with children with special needs that lawsuits are the only way to get effective help. If anyone out there has advice or knows of a good attorney on these matters, please let me know. I think it is time for another battle.
Jack is still very active and is babbling all the time. He loves to "talk" and I think he is convinced that I can understand him. He is also getting very good at pushing toys and furniture together to reach objects. I am often finding him on top of the kitchen table. Also, his favorite books are now about trucks and animals. Emily and Jack have started to "play" together (which means that Jack follows Emily around the house and copies what she is doing).
John is working hard and I am now at a new job. It is too soon to tell what will happen with both of our jobs.
Bye for now...
Thursday, October 03, 2002 at 04:08 PM (CDT)
Happy 1 year anniversary Emily! We have made it this far and what a miracle it is. We came back from Duke late last night and the visit was full of tests and procedures. Emily had an awful day on Monday at school because she was so anxious about one of the procedures at Duke. I heard that she cried almost the whole time that she was at school and that she was completely inconsolable. I felt terrible when I heard this as the school was unable to contact me or John or any of the emergency contacts to come and get her. I was at the Department of Labor signing paperwork. John was at work and I don't know what happened re our emergency contacts...
Dr. K was happy to see Emily and her progress. We talked about the memory, appetite and fatigue issues, too. She is always so hopeful. I asked her when we could start to breathe more easily about her cancer and she said that the fact Emily made it this far is a good sign. Our remaining issues are what all pediatric transplant patients have to think about -- cataracts, thyroid issues, sterility (almost certainly the case), growth problems, and a second type of cancer (this is the one I fear the most for obvious reasons). We really are so blessed to still have Emily with us.
Thank you to everyone who has stood by us during the most difficult year of Emily's life. Your love, prayers, support, well wishes, e-mails, letters, phone calls, and gifts have helped us in many ways. We are so fortunate to have you in our lives.
Little Joanne is doing very well now at Duke and is truly a miracle child. She has surprised everyone with her recovery! Andrew is now home in Maryland and also doing well. We continue to pray for all the families in the transplant unit at Duke, the children who are still healing from their transplants, and for those who have lost their children, especially the Allen family.
I will write again soon. :)
Tuesday, September 24, 2002 at 08:52 AM (CDT)
Emily and I had a good time at the White House.We sat in the front and about 8 feet from
President Bish and Lance Armstrong. President Bush gave a wonderful speech about the
importance of finding a cure for cancer. Lance Armstrong was such an impressive
representative of someone who beat this terrible disease. Emily enjoyed herself but got very
tired towards the end and started whimpering a little. Thankfully, the presentation was almost
over. :) However, at one point during his speech, President Bush paused to take
a breath and Emily chose that precise moment to let out the LOUDEST sigh imaginable
(followed by a "I am bored. When is the show going to start?") You should know that
there was no show scheduled; she forgot that I had told her this. Furthermore, the President
would have to be severely hearing impaired not to have heard this sigh. (thankfully, Emily whispered the words about being bored) To say that I was embarassed is a major understatement. Oh well, this will just have to be
one of those stories that I save for Emily and tell her when she is older. Lastly, we saw some very influential people, including the directors of the Center for Disease Control, NIH, NCI, Leukemia and Lymphoma Society, as well as some old friends.
Emily's health continues to improve. We are still struggling with eating issues and her
stamina but she is a much happier child. Thank God. Last night, she even initiated a
conversation about having a play date with a classmate!
Her memory damage has started to become an issue at school. (She forgets to bring home
her homework and to give it to her teacher, she is not retaining and processing simple
instructions in class, she is forgeting what she is supposed to do for her homework....) I know
that she is also starting to feel some anxiety about her lack of memory. All we can do is keep
working with her and hope that we eventually find a way to help her.
Jack has transformed into a different child this week. He has started crying more and having many temper tantrums. I think that he is uncomfortable because both of his molars are coming in at the same time. His new favorite pasttime is to watch the Wiggles on video. I am trying to limit the time that he is in front of the TV and he is NOT happy about this, and constantly pointing to the videos and the TV. He really enjoys dancing and "singing" along with the Wiggles. (I get a good laugh when I see him trying to imitate a duck.)
Tuesday, September 24, 2002 at 08:43 AM (CDT)
Tuesday, September 24, 2002 at 08:32 AM (CDT)
Emily and I had a good time at the White House.We sat in the front and about 8 feet from
President Bish and Lance Armstrong. President Bush gave a wonderful speech about the
importance of finding a cure for cancer. Lance Armstrong was such an impressive
representative of someone who beat this terrible disease. Emily enjoyed herself but got very
tired towards the end and started whimpering a little. Thankfully, the presentation was almost
over. :) However, at one point during his speech, President Bush paused to take
a breath and Emily chose that precise moment to let out the LOUDEST sigh imaginable
(followed by a "I am bored. When is the show going to start?") You should know that
there was no show scheduled; she forgot that I had told her this. Furthermore, the President
would have to be severely hearing impaired not to have heard this sigh. (thankfully, Emily had the sense to whisper the words about being bored) To say that I was embarassed is a major understatement. Oh well, this will just have to be one of those stories that I save for Emily and tell her when she is older. Lastly, we saw some very influential people, including the directors of the Center for Disease Control, NIH, NCI, Leukemia and Lymphoma Society, as well as some old friends.
Emily's health continues to improve. We are still struggling with eating issues and her
stamina but she is a much happier child. Thank God. Last night, she even initiated a
conversation about having a play date with a classmate!
Her memory damage has started to become an issue at school. (She forgets to bring home
her homework and to give it to her teacher, she is not retaining and processing simple
instructions in class, she is forgeting what she is supposed to do for her homework....) I know
that she is also starting to feel some anxiety about her lack of memory. All we can do is keep
working with her and hope that we eventually find a way to help her.
Jack has transformed into a different child this week. He has started screaming and crying
more and having many temper tantrums. I think that he is uncomfortable because both of his
molars are coming in at the same time. His new favorite pasttime is to watch the Wiggles on
video. I am trying to limit the time that he is in front of the TV and he is NOT happy about this, and constantly pointing to the videos and the TV. He really
enjoys dancing and "singing" along with the Wiggles. (I get a good laugh when I see him trying
to imitate a duck.)
Tuesday, September 24, 2002 at 07:56 AM (CDT)
Emily and I had a good time at the White House.We sat in the front and about 8 feet from President Bish and Lance Armstrong. President Bush gave a wonderful speech about the importance of finding a cure for cancer. Lance Armstrong was such an impressive representative of someone who beat this terrible disease. Emily enjoyed herself but got very tired towards the end and started whimpering a little. Thankfully, the presentation was almost over. :) However, at one point towards the end of his speech, President Bush paused to take a breath and Emily chose that precise moment to let out the LOUDEST sigh imaginable (followed by a "I am getting bored. When is the show going to start?") You should know that there was no show scheduled; she forgot that I had told her this. Furthermore, the President would have to be severely hearing impaired not to have heard this sigh. To say that I was embarassed is a major understatement. Oh well, this will just have to be one of those stories that I save for Emily and tell her when she is older. Lastly, we saw some very influential people, including the directors of the Center for Disease Control, NIH, NCI, Leukemia and Lymphoma Society, as well as some old friends.
Emily's health continues to improve. We are still struggling with eating issues and her stamina but she is a much happier child. Thank God. Last night, she even initiated a conversation about a play date with a classmate!
Her memory damage has started to become an issue at school. (She forgets to bring home her homework and to give it to her teacher, she is not retaining and processing simple instructions in class, she is forgeting what she is supposed to do for her homework....) I know that she is also starting to feel some anxiety about her lack of memory. All we can do is keep working with her and hope that we eventually find a way to help her.
Jack has transformed into a different child this week. He has started screaming and crying more and having many temper tantrums. I think that he is uncomfortable because both of his molars are coming in at the same time. His new favorite pasttime is to watch the Wiggles on video. I am not comfortable with him watching a lot of TV, so we limit the TV to 1 hour a day. He is NOT happy about this and is constantly pointing to the videos and the TV. He really enjoys dancing and "singing" along with the Wiggles. (I get a good laugh when I see him trying to imitate a duck.)
Tuesday, September 17, 2002 at 07:50 AM (CDT)
Emily is still adjusting well to school. Our news for today is that Emily and I are going to the White House tomorrow to see President Bush and Lance Armstrong! She is getting pretty excited about it and I will let you know how the visit goes. I will bring a camera along and try to get a picture. :)
Emily's health seems to also be getting better. Her appetite is still lacking but her spirit continues to improve with her stamina. We are hoping to start decreasing her medications after our next visit to Duke.
John and Jack are doing well. Jack insists on doing "homework" with Emily. He also seems to think that he no longer needs to take naps during the day. (He gets so tired but does not want to miss out on all the "fun" that we are having without him.)
Bye for now. . .
Tuesday, September 10, 2002 at 12:42 PM (CDT)
Hello everyone! Emily has surprised almost all of us and transitioned pretty well into school. Her classmates seem to be kind and supportive and the school has been wonderful. The school happens to have two rabbits in an enclosed courtyard and she LOVES to see the bunnies every day. She has also made a little friend in her class and this is probably more exciting for me than it is for her! We will be going down to Duke for her 1-year checkup at the end of this month. I cannot believe we are getting close to a year and feel so blessed that she is still with us. Her sessions with her psychologist continue to help her, as well as her forced interactions with other students in her class. She is currently going to school for half a day and we hope to return to full day at the beginning of next year. Medically, she continues to improve and we have started decreasing her steroids again. Her sleep cycle is still not perfect but is also getting better.
Jack also continues to keep us laughing. He is now showing off his temper (I wonder where he got that from :) ) and becoming much more vocal about his wishes. He still adores Emily and is now trying to copy everything that she does. Whatever she has, he must also have. Whatever she is doing, he insists on participating. Wherever she goes, he must follow. I think it is so cute; Emily is getting a little annoyed. Bath time has become especially tricky because he likes to grab a cup, fill it with water and pour water OUT of the tub. If I grab the cup from him in time, he just grabs a washcloth, soaks it with water and flings it out of the tub with a big squeal.
Thank you for continuing to check on Emily. We love hearing from you. I had mentioned Joanne a few entries ago and am happy to report that she is doing better. This is wonderful news. On a sad note, a little boy named Michael (who received a transplant a few weeks after Emily recieved hers) lost his battle and passed away last week from complications with graft-versus-host disease. He and his family had been at Duke for almost a year. Please pray for his family as they have been through so much and now must cope with the loss of Michael.
Bye for now....
Tuesday, August 27, 2002 at 08:50 AM (CDT)
Hi everyone! Emily had a happy birthday and we are thrilled to see her turn 8! We had family in town for her birthday and she wore her favorite pink velvet/chiffon dress. It seems that August is a month for major events, thus the absence in journal entries. (sorry) In addition to Emily seeing her 8th birthday, today is another big day. Her first day back in school since her relapse. Unbelieveable.. I had not allowed myself to even imagine that this day might arrive. Well, Emily is not exactly excited about school and I am anxious about her reentry, but it had to happen. We visited the school a few times last week in order to get her used to the building, and her teacher (and other faculty members) are helping us with this difficult transition. Dr. K and Emily's psychologist firmly believe that this will be good for Emily and that she needs to start interacting with other children again. I hope that the children are kind to her and that she finds a friend. She has been through so much; it would be wonderful to see her playing with friends again.
Medically, Emily continues to improve. She is getting stronger and showing more spirit. She still tires very easily and is not eating well, but she seems to be getting better. We are hoping that we can get her physical and occupational therapy through the school system to help her with her coordination and stamina. (We noticed during the tour of the school that she was having difficulty getting up and down the stairs.) Her strange tic-like behavior has doubled in frequency since my last journal entry and the doctors suspect that this is related to her anxiety about school. Again, I hope that she is able to get through the day without falling apart emotionally.
Jack continues to keep us active. He is climbing everything now and his favorite room is Emily's room. Of course, he can choke on numerous objects in Emily's room and is more than happy to grab her markers and start drawing on whatever looks interesting. He is also eating crayons and LOVES to use the automatic pencil sharpener. Needless to say, we have an abundance of sharpened pencils, crayons, ...... He is also communicating in sign language (I started teaching him some words in sign language because he was getting frustrated with his inability to communicate clearly with words.)
Well, that is all the news for now. Thanks for checking in on Emily and for the happy birthday wishes. I will try to update more frequently. :)
Wednesday, August 07, 2002 at 07:51 AM (CDT)
Hi everyone. Sorry for the delay in updates. Emily is doing the same. We are now forcing her to stay awake for longer durations during the day in anticipation of her re-entry into school. She will be going to school for just a few hours in the morning until she is stronger and her immune system recovers. She will probably miss a few days during the week because of doctors appointments.... As hard as this will be on Emily (emotionally, physically and mentally), I think this is the best thing for her. She has been isolated from people, especially children, for so long that it is becoming a problem. Emily's birthday is coming up (August 16) and we are amazed and excited. So is she. It is so hard to believe that she is going to be 8. I pray that she has many many more birthdays and that they just get better from now on. It is time for her to be happy and healthy and live like a child should live.
Baby Jack is no longer a baby. :-( I cannot believe how fast he is growing. His latest "tricks" include dancing the Macarena(!), playing tug-of-war with Emily over anything that she is playing with, screaming and shrieking when he does not get his way, climbing out of the high chair, climbing up and down the stairs by holding onto the guardrail (this does not make me happy), blowing kisses, and giving ME a hug when I come home from work!
John's back is much better and he is recovering nicely.
Finally, I must tell you about Joanne. Her wonderful parents contacted me when we were at Duke because their daughter was in need of a transplant, and they had heard about Emily. She is a little 9-year-old girl from San Francisco who went to Duke in April for her transplant. She is 9 and loves to play puzzles, draw, and do arts and crafts (sounds a little like Emily). John and I met Joanne's parents when we took Emily to Duke for her follow-up. We found out yesterday that Joanne is in the Pediatric ICU and unconscious. The PICU is a hard place to be for any parent, but an especially traumatic and lonely place to be if you are the parent of a transplant patient. I talked to Anne (Joanne's mom) last night and could clearly hear the distress and fear in her voice. Please please pray for Joanne that she will improve and that her body will respond to the medications. It sounds like she is suffering from some of the same complications that Emily faced, as well as several other issues.
Finally, I visited Andrew Lee's website yesterday and his father had posted the lyrics of the following song: (I read the lyrics and they really hit home)
I'm down on my knees again tonight
I'm hoping this prayer will turnout right
See there is a boy that needs your help
I've done all that I can do myself
His mother is tired
I'm sure you can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes
Can you hear me?
Am I getting through tonight?
Can you see him?
Can you make him feel all right?
If you can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there
repeat chorus
Can you hear me?
Can you see him?
Please don't leave him
He's my son
©2000 Mark Schultz Music/BMI
Thanks for checking in on Emily. Hope you have a good day!
Tuesday, July 23, 2002 at 01:18 PM (CDT)
Hi everyone. Emily is about the same. We are thinking about trying a new steroid to increase her appetite and hopefully gain weight. Her immune studies came back and we are relieved to report that she is making progress (not a normal immune system yet but slowly getting there). :-) She is not happy about the idea of going back to school. We are waiting to hear from Dr. K about the timing of her reentry (whether to wait until January or try to start her in the fall). We are working with her psychologist about several of the emotional issues that she is dealing with and hope to see some progress....
John's back is much better. Thank you to everyone who prayed, e-mailed, called and/or signed the guestbook. I think he got more attention from you than he did from me! (ha ha) He is still in some discomfort at night but not in nearly as much pain.
Jack is sooooo active and becoming very expressive and vocal about his feelings (screaming, squealing, crying, shreiking, laughing, giggling.....). In fact, the latest emotion to surface is jealousy. He does not like ANYONE spending time with his daddy. He will find a way to wedge himself between John and the person next to him, and if that does not work, he will actually push the person away. In fact, last night he tried three times to push his three-year-old cousin, Maddie, off of John's knee (he was reading a book to Maddie). It apparently made no difference to Jack that he was sitting on John's other knee. Meanwhile, I am still waiting for the day when he notices that I have returned home from work. :-)
Hope you have a good day!
Tuesday, July 23, 2002 at 07:42 AM (CDT)
Hi everyone. Emily is about the same, so that is good. We are thinking about trying a new steroid to increase her appetite and hopefully gain weight. Her immune studies came back and we are happy to report that she is making progress (not normal immune system yet but getting there). :-) She is not happy about the idea of going back to school. We are waiting to hear from Dr. K about the timing of her reentry (whether to wait until January or try to start her in the fall). We are working with her psychologist about several of the emotional issues that she is dealing with and hope to see some progress....
John's back is much better. Thank you to everyone who prayed, e-mailed, called and/or signed the guestbook. I think he got more attention from you than he did from me! (ha ha) He is still in some discomfort at night but not in nearly as much pain.
Jack is sooooo active and becoming very expressive and vocal about his feelings (screaming, squealing, crying, shreiking, laughing, giggling.....). In fact, the latest emotion to surface is jealousy. He does not like ANYONE spending time with his daddy. He will find a way to wedge himself between John and the person next to him, and if that does not work, he will actually push the person away. In fact, last night he tried three times to push his three-year-old cousin, Maddie, off of John's knee (he was reading a book to Maddie). It apparently made no difference to Jack that he was sitting on John's other knee. Meanwhile, I am still waiting for the day when he notices that I have returned home from work. :-)
Hope you have a good day!
Saturday, July 06, 2002 at 12:52 PM (CDT)
Hi everyone. I hope you have a fun 4th of July. Emily has taken a few steps back since our return from Duke. She is not eating well again and she is not sleeping well either. No explanations for this.... I am still trying to get her the physical therapy she needs and daily fighting the insurance company and the Home and Hospital School Program. This program has been a nightmare for us, and at this point, I don't know who I am more frustrated with - the insurance company or the HHS Program. We are still waiting for Emily's immune study results and I will post the results as soon I get them.
John has now severely injured himself and has been unable to move around. (He did something to his back and was in TREMENDOUS pain. I don't think that I have ever seen his so miserable and in so much pain.) Thanks to Lisa, April, Joe, and Lucciola for helping take care of the children while I was at work this week. On my job front, still no positive news but I must keep trying.
Jack is still keeping us laughing. He is now walking very well and has two new teeth. He refuses to eat baby food (I cannot say that I blame him) and seems to be enjoying ham and cheese sandwiches. He is such an easy (and ACTIVE) baby. He went to the pool for the first time with my friend Lisa and apparently went nuts for the first five minutes (screaming and crying). Once he got used to the water, I think he had a good time. :)
Well, I must get back to the kids. Thanks for checking in and please feel free to write in the guestbook.
Wednesday, June 19, 2002 at 08:22 PM (CDT)
Hi everyone. We just returned from Duke. It feels like we have been away for a while and it felt strange returning to Duke. Emily was not happy about it and we spent 11 hours in the hospital yesterday. She would probably tell you that it was not the best day for her. Accessing her port (in her chest) meant a lot of hysteria, screaming, crying and struggling. She is so scared when the nurses have to push the needle into her chest and the Emla cream does not seem to lessen her fears. By the time 7:30 rolled around (we had been waiting close to 4 1/2 hours to see Dr. K), she was really tired and very hungry. I felt so bad for her and raced through my (and John's) questions in order to quickly get her and Jack some food and rest
On our drive back, we had a scary experience. Everything was going well and then about 30 miles from Richmond, we hit a snag. John was driving behind a truck and started to saying "rocks rocks rocks." I had no idea what he was talking about until we heard a loud crash. The right hand side window had been hit and glass was flying into the car! A huge rock fell out of the truck in front of us and smashed into the window. Thank God that neither Emily nor Jack was sitting next to the window. I cannot even imagine what would have happened to them. We pulled over into a small town but then realized that we were so shocked that we did not pay attention to how we got there (thus making it difficult to tell the tow truck where to go to help us). About an hour later, we were back on our way home. I think that was enough excitement for at least a few days. :)
Emily has been improving over the last week. We have had to increase her steroids for weight gain and FK-506 (her anti-graft vs. host disease medication) for GVH rash, but she is doing OK with her other drugs. She has become more active and is now back to her puzzles and games. I don't know if the improvement is due to the increased food intake (thus increasing her energy level) or just time. It does not matter- I am just happy that she is taking some baby steps forward. I went to an educational bookstore last week and found some materials to help her with her reading and math. Interestingly, she has started to pursue these studies without any pushing or coaxing on my part.
Lately, Jack has been imitating Emily. When she decides to read a book, he picks up a book and plots down next to her. If Emily wants to go to her room, he trails after her with a big grin on his face. He is getting more affectionate (if that is even possible) and loves to hug her.
john and kathleen
Sunday, June 09, 2002 at 03:33 PM (CDT)
Hello everyone.
Emily’s labs seem to have stabilized and she has gained a pound. We were cautiously waiting for her FK506 levels but were informed that the lab lost the results. We are concerned because GVH rash appeared around her face and neck, and have been applying Protopic ointment (anti-GVH medicine). We also noticed that she wasn’t experiencing any hand tremors, which may indicate low levels of FK506 (which fights against transplant rejection). Unfortunately, we have to wait another week until the test can be performed again.
Tomorrow, we plan to meet with Bells Mill Elementary School faculty to review Emily’s IEP (Individualized Education Plan). We already have received approval for home teaching during the summer, but we are also trying to obtain supplemental and specialized teaching to overcome her slight learning disability due to the radiation and chemo.
Kathleen is still making a lot of lemonade. She has had many leads on job opportunities and is pursuing all of them. She has even contemplated starting her own trademark practice.
Jack is all over the house, now. He is getting into everything, especially the kitchen cabinets. He is also trying to vocalize more but still points and says “UH!” Like I can guess what that means. Fortunately, he either nods his head with approval or turns his head in disgust (as if). Last night I guess he was tired and I didn’t pick up on it, so Jack just climbed up the stairs and walked into his room and waited for me to place him in his crib. We need to buy him a bed.
john
Friday, May 31, 2002 at 09:50 AM (CDT)
Hello everyone. I am sorry to be away for so long. A lot has happened recently.
First, Emily is almost the same as before. Her nausea has eased but the neuropathy and other complications are still very much a part of our every day life. I met with her psychologist today and while she was extremely helpful, I left the office realizing once again how much work we have ahead of us and the special needs that Emily requires. Her blood levels have stabilized more and we are working on her appetite. Increasing the steriods has helped but we are struggling to keep her from losing more weight. She is such a trooper, though.. I don't know where she gets her strength. Lately, it seems to be harder on me emotionally and I cannot bear to look at pictures of her before all of this happened. It breaks my heart when I see her suffering now and struggling to get through the day's activities. Then I stop myself and thank God again that she is alive and that I can still hold her and tell her that I love her. We are so blessed to still have her with us.
Jack continues to keep us laughing. He is walking well now and keeps finding new places and objects to explore. His latest activity is to dance and bop his head to the beat of the music. It is cute to watch. (He kind of looks like John when he dances.) :)
When life gives you lemons.... well, it looks life is not finished throwing us curve balls. I found out that I am losing my job at the Patent & Trademark Office due to a reduction in force. The news is shocking and I find myself still trying to comprehend the unfortunate ramifications that this will have on my family, particularly Emily. Emily's health insurance coverage was through the Trademark Office; I have probably lost the flexibility in scheduling that is needed to help with Emily's care; the loss of income is certainly devastating ... It is strange. I thought that the trials would stop for a while and that we could begin focusing on finding ways to help Emily work through her pain and complications. It looks like I was wrong.
Well, it is time to go make some lemonade.
Hope you had a good day.
Thursday, May 30, 2002 at 03:30 PM (CDT)
Hello everyone. I am sorry to be away for so long. A lot has happened recently.
First, Emily is almost the same as before. Her nausea has eased but the neuropathy and other complications are still very much a part of our every day life. I met with her psychologist today and while she was extremely helpful, I left the office realizing once again how much work we have ahead of us and the special needs that Emily requires. Her blood levels have stabilized more and we are working on her appetite. Increasing the steriods has helped but we are struggling to keep her from losing more weight. She is such a trooper, though.. I don't know where she gets her strength. Lately, it seems to be harder on me emotionally and I cannot bear to look at pictures of her before all of this happened. It breaks my heart when I see her suffering now and struggling to get through the day's activities. Then I stop myself and thank God again that she is alive and that I can still hold her and tell her that I love her. We are so blessed to still have her with us.
Jack continues to keep us laughing. He is walking well now and keeps finding new places and objects to explore. His latest activity is to dance and bop his head to the beat of the music. It is cute to watch. (He kind of looks like John when he dances.) :)
When life gives you lemons.... well, it looks life is not finished throwing us curve balls. I found out that I am losing my job at the Patent & Trademark Office. The news is shocking and I find myself still trying to comprehend the unfortunate ramifications that this will have on my family, particularly Emily. Emily's health insurance coverage was through the Trademark Office; I have probably lost the flexibility in scheduling that is needed to help with Emily's care; the loss of income is certainly devastating ... It is strange. I thought that the trials would stop for a while and that we could begin focusing on finding ways to help Emily work through her pain and complications. It looks like I was wrong.
Well, it is time to go make some lemonade.
Hope you had a good day.
Wednesday, May 15, 2002 at 04:22 PM (CDT)
Hi everyone.
Yesterday, Emily and Jack, both had a terrible experience at the phlebotomist. Emily has such poor venous access on her arms that the phlebotomist had to draw her blood from her hand. Emily bawled the through the whole procedure and wouldn’t stop crying until I told her Jack is also getting his blood drawn. She seemed almost delighted by the prospect that Jack would be undergoing this painful procedure. Jack, on the other hand, bawled because I was retraining him. Jack didn’t even flinch when the needle pierced his skin.
Today, Emily was complaining of feeling nauseous as we drove to Georgetown Hospital. As I looked for a bag, she vomited all over the back seat. Jack just looked in total amazement (like that scene in Exorcist). Well, afterwards, Emily felt much better. After cleaning up the mess and changing her clothes, we continued our drive to Georgetown.
Once we arrived, Emily was disappointed that her bowl wasn’t ready yet. It still needed to be fired in the oven. She will have to wait another week before giving Kathleen her present.
Emily’s Bicarb remains stable and her BUN and creatinine have slightly improved. This means that her hydration is adequate. Thank you for your suggestions on improving her fluid intake. As Emily makes improvements, life pitches more curve balls. Emily’s potassium level is dangerously low, again. We started her back on the potassium supplements. In addition, Emily had a mild temperature this morning. I’ve been monitoring her temperature and it continues to be around 99.5 degrees. If it goes any higher, we may have go back to the hospital for IV antibiotics.
Last year when Emily relapsed, another Asian child from the Rockville area, name Andrew, was looking for a bone marrow donor . He is now 21 days post transplant at Duke (also in Emily’s old room) and is showing signs of engraftment. Way to go Andrew.
john
Wednesday, May 08, 2002 at 02:24 PM (CDT)
Hi Everyone. Kathleen has been very busy at the Trademark Office and hasn't found the time to add any new journal entries. It appears that I have assumed the duties for now. Although I wish I had the time to update more frequently, I will do my best to at least update on a weekly basis, after Emily's appointment.
We met with Dr Shad and Suzanne (Emily's primary Nurse Practioner) today. They both raved about how well Emily is improving. All her lab results have improved and are within normal limits. The sodium bicarbonate tablets are doing trick and Emily prefers them over the Bicitra solution. However, it's still a constant battle over her drinking more fluids. Emily made the remark to Kathleen, "I want you to stay home because Daddy is very mean and makes me cry." Oh boy! I felt soooo low.
Before our visit with Dr Shad, Emily had the chance to glaze her bowl she made out of clay a couple of weeks ago. Of course, she painted it pink, purple and blue which appear to be her favorite colors. Emily has decided the bowl will be a Mother's Day present for Kathleen.
Having Emily work on art projects has lessen the anxiety during her doctor visits. Emily seems more comfortable and less fearful. Georgetown has a dedicated area in the waiting room for children to express themselves through art. Every time we walk in to the clinic, Emily is always drawn to this area. In addition, the clinic also has two Art Therapist, Tracy & EJ, who have sparked Emily's interest in art again. (This is something Duke should check into)
Emily is still tired during the day. We suspect she is up at nights. We tried giving her something to make her fall sleep for a few nights, but she reverted back after we stopped. Neverless, Emily has agreed to only sleep when Jack sleeps.
As for Jack, he has learned to close and open his bedroom door. As soon as he learns to climb out of his crib, nothing will prevent him from venturing out through the front door. Heaven help us!
john
Wednesday, May 01, 2002 at 01:45 PM (CDT)
Hi everyone. We just returned from Georgetown Hospital. Her lab results have improved since last week. Although her bicarb and magnesium are borderline low, her creatine and BUN, which are indicators of her kidney function and hydration, are better. It seems like a constant battle to get Emily to drink more. The only thing she will drink is Sprite and usually it's only a glass or two a day. I have resorted to the deceptive practice of marking her glass of Sprite(where she has to drink) and constantly tilting the glass so that she drinks more.
To increase her bicarb levels she is on a liquid medicine called Bicitra which she does not care for, AT ALL. It seems that Emily hates all liquid medicines. Therefore, we are going to try sodium bicarbonate tablets. Hopefully, this will do the trick.
Emily had some abdominal pain over the weekend. There is a concern that it might be GVH but it resolved yesterday. It may have been due to the Zithromax (antibiotic) she was taking as a preventative after Kathleen came down with Strep last week. Besides, her liver function numbers are all within normal limits.
In addition to the above results, her hemoglobin is now above 13, at 13.2 (normal is 11.5 - 14.5) and platelets are 158 (normal is 140-440). Her white bloods are also within normal limits and appear normal.
It's great to hear that many of Emily's friends from the transplant floor are also doing well. We often visit their caringbridge websites for news of their recovery. Our thoughts are with them, Austin, Sam, Garrett, Ryan, Michael and Taylor. Our thoughts also go out to Emily's two new friends who recently received their transplant, Andrew and Joanne. GROW CELLS! GROW!
john
Friday, April 26, 2002 at 10:13 PM (CDT)
Hello everyone! Well, our days continue to go up and down, and Emily takes steps forwards and backwards. Lately, she has been really dehyrated and has had to receive hydration (which really scares her because the doctors have to access her port -which is a device under her skin in the chest region, and the needle has to penetrate through the skin and hit the port to draw blood and to give her the medications that she needs). Lately, she seems to be getting more depressed again and is showing some signs of anxiety. We are starting to take her to a neuropsychologist on a regular basis and hope that this will help her to release some of the fear/anxiety/anger/depression that she is feeling. I pray that this helps her as I know that there is so much going on inside that heart and head of hers.... She is also struggling with her kidney function numbers and we have not had a lot of success in getting her better. I have resorted to contacting Dr K because my head is starting to play games with me again.
Jack continues to thrive and amuse us. He is having so much fun tormenting Emily and trying to become a pro at going up and down the stairs.
Work is still very busy. I worry about Emily when I am there and it seems to take just one phone call from John about her test results to derail me. She threw up last night and I am also concerned about what that could mean... (Is it her kidneys? Is it GVH? Is it a virus? The questions can go on forever.) I am trying to train myself once again to compartmentalize my thoughts and to try and separate my emotions from my work. (I used to be really good at this; it seems that I am out of practice.) As I sit here writing this journal entry, I cannot stop my mind from wandering off and thinking about the test results that we received tonight about her kidney function. It seems that the complications and side effects of her transplant never leave my mind for long. Perhaps with time I will find longer stretches of peace with the life that Emily (and John, Jack and I) now leads. I am so grateful that she is alive. We truly are so blessed to see Emily every day and to know that she is still breathing and walking and talking and giggling (once in a while)....
Her physical therapy and schooling at home continue. I think the PT is definitely helping her. I hope that the schooling is also helping, though it is hard to tell.
I read in the journal entry about the wonderful Grace community. Between Emily's 1st grade teacher, the "moms" who helped take care of Jack and Emily (and me), the meals, the cards, the gifts, the e-mails, the fund (thank you to Mike McAuliffe and his firm), the *prayers*... We are so blessed. John and I are also fortunate enough to work (at the NNMC and the PTO) with very compassionate and supportive people. We continue to be humbled by the support that we have also received from complete strangers and anonymous helpers. Thank you and bless you.
I will write again soon. Hope you have a good night.
Saturday, April 20, 2002 at 09:00 AM (CDT)
Hi everyone. Emily is doing better today. Her counts are still good and she seems to be getter stronger. She continues to take a lot of naps during the day and does not socialize very much yet but hopefully with time that will change. She is improving with her physical therapy and is trying hard. We do not think that she is dehydrated anymore and that is very good news. However, it is a struggle to get her to eat and drink. On a positive note, Emily is very happy to have her grandparents from Indiana in town. My aunt and uncle also came down from NJ. We were up late last night talking and laughing hard and she could not resist joining in the fun. She did some of her old tricks again (ex. wiggling her ears) and started giggling and playing with her puzzles. :)
Jack loves exploring the house (particularly the crevices and places where he does not belong). His favorite activity is to climb up the stairs (while always making sure that he is being followed so that he does not fall down the stairs- clever boy!), play with the VCR and videos, and open the drawers in the kitchen. He is walking now (though he prefers to crawl) and we are celebrating his first birthday today. (His birthday is actually not until Wednesday.) He is growing up so fast.
I started back at work on Monday. The hours have been long (about 12-13 hours a day) and on some days, I have been getting up at 5:00 to get to work. There has been a lot of start-up work to do (ex. sorting through approx. 2,500 e-mails). I have forgotten a lot of information since I have been out (this has been very frustrating). I am disappointed and am anxious to recall everything quickly. I want to be efficient again and as soon as possible. Emily is not happy about my return to the office and is getting stressed out about it now. I am trying to make her feel better but have not had much success yet...
Thank you to our friends who have e-mailed me and signed the guestbook with helpful advice, support and offers of help. I hope that Emily will start to feel better about herself soon and get her strength back so that she can begin seeing some of her friends again. She is still in isolation (until approx. October) and we have to be very careful about visitors/germs/infections, but we don't think it is good for her to be completely separated from her friends. We have also been so fortunate to receive offers of help from the Bells Mill community. Thank you!
Well, time to get ready for Jack's party. Emily wanted to have a cake too and I told her it would be fine as long as Jack could share her birthday with her. She quickly changed her mind and said that she would just help Jack blow out his candle if he could not do it himself. :)
Hope you have a good weekend!
Saturday, April 13, 2002 at 10:14 PM (CDT)
Hi everyone. We have had a busy few days. Emily is dehydrated and the doctors here wanted to get her hydrated and we had a nurse come to our home to access Emily's port. Unfortunately, she missed the port and flushed saline into the skin instead of the port. Emily SCREAMED and started crying. The nurse tried again and we thought everything was OK. Five minutes after she left, Emily said that she was in pain. I looked at her port site and she was swollen from her chest to her neck! The nurse had missed the port again and the hydration was pouring into the wrong area! I rushed her to the hospital (thank you Liz J. for watching Jack for us!) and she was completely hysterical when the nurses there tried to take a look at her. She cried so much that day that her eyes were still swollen when she went to bed that night. To say that I want to go after that nurse is to put it mildly. Emily has suffered so much already and she really inflicted A LOT of pain on Emily. I don't know how we will be able to access her port in a few weeks when she has to receive her medicine, without her getting hysterical again. I cannot say that I blame her. I called the healthcare company and told them that the nurse is no longer welcome in this home.
Emily is still continuing her physical therapy and her schooling.
Jack is as active as ever. He took four steps the other day and is getting ready for his first birthday (April 24). He loves exploring the house and is still thrilled at the sight of Emily.
Thanks for checking in on us and hope you have a good day.
Monday, April 08, 2002 at 09:17 PM (CDT)
Hi everyone. Life has gotten so busy here in Maryland. I feel as though I can barely catch my breath. The work never ends.
Emily is getting better and stronger every day. She is still experiencing the seizure-like activities but the neuropathy seems to have subsided. She started school with her home teaching teacher today and the teacher seemed nice. I really like Emily's physical therapist and Jack adores her. In fact, when she was getting ready to leave today, Jack actually followed her to the door, grabbed his shoes and tried to put them on!!! I couldn't believe it. He acts like he cannot hear me most of the time (probably because I am beginning with the word "No") and certainly does not seem to comprehend what I am saying to him. Boy did he have me fooled. :)
I am beginning to feel a bit overwhelmed with all that has to be done and there is never enough time for sleep, a cup of coffee, ... I think it will take some adjusting again. The good news is that I have had a lot of practice with it.
I am grateful that Emily is still with us today. We are so blessed.
Thursday, April 04, 2002 at 10:08 PM (CST)
Hi everyone. We are back home now in MD and thank you for all the wonderful guestbook entries. We are busy unpacking and getting all of Emily's needs taken care of. Jack was a bit freaked out upon arrival but is now having a great time exploring and pulling/yanking/climbing into things that he shouldn't be getting into. Emily is still adjusting to the return home and is emotionally more unstable than when we were in NC. She has become more clingy and is much more emotional. Hopefully, with time, this will stabilize. It was hard to say "good-bye" to Dr. K, Sue and Jayne. Emily actually said that she liked them and wished that she did not have to leave them! Wow.
John will start back at work tomorrow. I will miss his help.
I hope you had a good Easter weekend.
Wednesday, March 27, 2002 at 09:38 PM (CST)
Hi everyone. Well, we are in the midst of packing and getting all of Emily's help (physical therapy, doctors, schooling...) ready when we get home. Emily had her hickman broviacs removed yesterday and a port placed in her chest. She was so scared the night before and prior to the procedure. I kept telling her that she would not be in pain and that she would be asleep. She did not believe me. She said that she was supposed to be asleep for her spinal taps, too, but that she wasn't and that they hurt a lot. She was worried that she would be awake when she was in surgery. It broke my heart to think about how much she suffered during those awful spinal taps. Then the doctor came into the room and proceeded to tell us about the possible outcomes of the surgery. At one point, he actually said that there was a risk that Emily would DIE (that's right, "die") during the procedure. I nearly fell out of my chair and then leaped over to Emily to tell her that this was NOT IN ANY WAY going to happen to her no matter the doctor said. Yikes. I didn't know whether to verbally (and aggressively) question the doctor's common sense in front of Emily or just to ignore him completely. I chose to ignore him (which I suppose was the wise thing to do given that he was about to go into surgery with Emily).
Jack and Emily are THRILLED to have John back home. Actually, Emily nearly jumped out the car window when she saw him at the airport. Jack cried and screamed hysterically as soon as John got in the car. I don't know if he was mad at him or if he actually forgot who he was. All is now forgiven and he is trailing after John once again and giving him his hugs every time he gets a chance.
Now that we are getting ready to come home, I wanted to take a moment and to thank all of the wonderful people who have embraced us and helped to make Durham a second home to us. Thank you to the Notre Dame alumni (and friends) and the Korean Catholic community for the delicious meals, babysitting Jack and running various errands. Your generosity and support helped us so much. We have truly been blessed. We will miss you. Thank you to the nurses at the transplant unit and the clinic who have taken such good care of Emily and always shown her love and compassion. Kim Montague, you were so kind and patient with Emily and I hope that we will be able to see each other again soon. There are so many people that we want to say good-bye and thank you to..... Duke (and Durham)has truly become like a second home to us and I feel sad (and a little scared) leaving. The doctors and nurses have been amazing and we could not think of a better group to take care of Emily. We are so happy that we decided to bring her down here. But as Emily now says, "I can't wait to go home home." We still have a long and unpredictable road ahead of us but we are taking another step in the right direction. Thank God.
Thank you for continuing to follow our journey and for your prayers and support. Our friends back home (including those amazing people whom we have not even met but have helped us along the way), the Grace community, and my incredible co-workers at the PTO have never failed to let us know that they care. Thank you! We will see you soon.
Hope you have a good day.
Tuesday, March 19, 2002 at 09:22 PM (CST)
Hi everyone. It has been a hectic couple of days. John is back in Maryland for a week to get the house ready for Emily's return. I am still here with Jack and Emily. If not for the help of some very dear friends, I don't know how I would be able to keep my sanity. It has been a real challenge caring for the two of them, even with the help! They both miss him terribly. Emily must tell me at least ten times a day that she misses her daddy. Jack is just not himself lately and has become very clingy.
Emily continues to improve. Dr. K is pleased with her progress and now we are getting the ball rolling for the transition home. The doctors are accumulating all the records and the teachers are preparing the reports for the home teaching program. To say that we will miss them is a huge understatement. The doctors and nurses have been so caring and devoted to Emily and she has been thriving with the help of her teachers and physical therapist. She has not had any more nosebleeds and we are now weaning her off of the IV magnesium. Hopefully, she will be able to continue without it. If so, then the doctors will remove her broviacs next Tuesday and insert a port.
Thank you again for all your prayers and support. I learned recently that three children have relapsed. Please keep Andrew, Taylor and Joanne and their families in your prayers. I know how frightened and confused they must be. I thank God for another day with Emily and Jack.
Hope you have a good day.
Thursday, March 14, 2002 at 08:43 PM (CST)
Emily is doing better today and no nosebleeds. She was very chatty with Jamie and seemed to really enjoy school. I e-mailed Dr. K last night and she said that she did not think that Emily had relapsed. I realize that there are no guarantees. Perhaps that is the problem. However, the reality is that worrying will not change her fate, but it will affect the quality of life that we live. I suppose that it truly is a waste of energy and precious time to worry about something that I cannot change.
Emily's appetite is still not what it has been in the past but we continue to tempt her and hopefully will find something again that she feels like eating.
Thank you for your continued support and prayers for Emily. We look forward to seeing you again!
Wednesday, March 13, 2002 at 08:23 PM (CST)
Yesterday was a terrifying day for us. Just as we were getting ready to go to the hospital, Emily got a terrible nosebleed. I have NEVER seen anything like it. Absolutely nothing that we did would stop it and it went on for an hour! At one point, there was so much blood that she started gagging on the blood. I was so scared and Emily just kept crying and saying she was sorry. I could not believe she was apologizing for her nosebleed. It broke my heart. I could not decide between calling an ambulance to come and get her or to try to drive her over by ourselves. We finally got over to the hospital and spent a long day there. No news on what could have caused it. Today, she is really tired and is not herself. She is sleeping a lot and not eating very much. I can tell you that I am haunted now by that awful word that starts with an R and ends with an E. (I cannoy even bring myself to write it.) As we rode to the hospital yesterday, I held her and thought again about how life is so unpredictable. I silently yelled at myself for getting too comfortable and for planning the next few months. My worries about the bills, my job, our home, Emily's complications, setting up all the doctors and treatments for Emily.... seemed to become hugely insignificant so very quickly. I pray to God that Emily is OK.
I guess I never mentioned this before, but I am now living for October 2, 2002. The reason? The doctors say that children are likely to relapse within one year of the transplant. I don't need to tell you what a relapse would mean. If she makes it past October 2, 2002, then she has a great chance of having beaten the leukemia. Until that day, I guess I will continue to face the monster that has been trying to take my daughter's life and tell it to go to hell.
Well, I always try to end these entries with something positive and stories about Jack and Emily seem to work for me. Jack has been getting very chatty lately and I can tell that he wants sooooooo badly to say something understandable. He actually has "conversations" with Emily and they both end with a lot of giggles (well, Jack actually shrieks and yells). Jack is now trying to climb into the dishwasher and go for a swirl. Attempts to distract him with pots, pans, ladels, tupperware containers.... are useless and we frequently end up with a very frustrated and loud little boy by the time we have pried him away from the dishwasher. Jack has also started trying to walk, and can take a few steps by accident. Oh my....
Well, I thank God for another day with Jack and Emily and pray for many more.
Hope you have a good day.
Thursday, March 07, 2002 at 08:48 PM (CST)
Emily continues to improve. We have limited the use of the wheelchair for the longer days at the hospital. Also, she is beginning to enjoy school more (thanks in large part to her wonderful teachers Elaine and Marshall). We have started packing for our trip home. It is hard to think of leaving Duke, the incredible doctors and nurses, the special hospital teachers and the support system that we have down here. NC has truly become a second home for us. I visited the transplant unit this afternoon and it was great to see Emily's nurses again. It feels like a lifetime ago when in fact it has only been a few months. The nurses treated her so well and took such good care of her. I frequently remind her of how blessed she is to have so many caring people in her life.
We are going to try and stop the IV magnesium next week and see if we can avoid the frequent infusions that she had to receive before. If she is able to handle it, the doctors will remove her Hickman broviac catheters and insert a port instead. I think Emily will be very happy to have the catheters removed...
Jack is spending a lot of time trying to escape from us. He knows when he is up to something bad and usually sneaks a glance to see if anyone is watching (one of us is usually watching). As soon as he thinks the coast is clear, he starts squealing and makes a mad dash for whatever it is that he has in mind (the bathroom, Emily's puzzles, the trash bags, the shoes,...). He keeps us running. :)
Monday, March 04, 2002 at 02:08 PM (CST)
Thank you all for your supportive e-mails and guestbook entries. It had been a hard couple of days but I am adjusting to the news better and thinking now about our trip home. We are planning to come home at the end of March and now are in the process of trying to find her the doctors and help that she will need on our return. There is so much to do, but just one step at a time.
Emily's potassium and magnesium levels have been better as she is receiving IV magnesium as well as a tablet called Maginex (which she greatly prefers to the magnesium oxide). She is taking a potassium pill called K-dur and, again, she is much happier taking this pill. She had a good day at school today and her teachers were very happy with her. Her physical therapy session did not go as well today but hopefully will be better on Wednesday. She is still eating well (better and better every day) and is starting to have more energy. We have started taking her wheelchair away and she will hopefully be strong enough to take on the stairs when we get home.
Jack is still as active as ever. He is getting better at standing on his own and is trying to say a few words (such as "hello" when he hears the dial tone on the phone and "Emily" when he sees Emily). He is also getting better at imitating words. Emily and Jack have been playing together more lately and he enjoys resting his head on her and kissing her.
Thank you again for all of your support and prayers. We are blessed to have you out there.
We have finally added a few pictures of Emily and Jack on this website (under photo album).
Hope you have a good day!
Wednesday, February 27, 2002 at 02:31 PM (CST)
Sorry for the delay in the update. We took Emily to neuropsychologists and I am now devastated with the news that we received. The doctors told us that the medicines that she received were toxic to her brain and that Emily's memory function has been permanently damaged. We had thought previously that she would eventually regain her memory. All of her verbal and non-verbal skills have been impacted and the test results showed a drop in her test results. I don't know what to say. She will need a physical therapist, a psychologist, a cognitive developmentalist and an individualized education plan. To say that I am sad about what we have learned is to put things mildly. It seems that I am continually losing my dreams and hopes for Emily. I guess that it is now time to stop dreaming for her and let her create her own hopes and dreams.
Friday February 22, 2002 7:09 PM CST
Hello everyone. Emily is doing the same today. She had to go into the hospital again yesterday for a magnesium infusion and tomorrow for a potassium infusion. We have switched the potassium and magnesium medications and she seems to be tolerating her new meds better. Thank goodness. She is improving in school every day and really starting to make progress. We LOVE her teachers Marshall and Elaine. They are so patient with her and great at encouraging her along without crushing her self-esteem. She is also starting to enjoy her time with Jamie (her physical therapist), who is also wonderful with her.
Jack has started dancing. It is very amusing to watch as he wiggles arounds. He also got a haircut from John. He is still cute but has A lOT less hair. :)
Hope you have a good day!
Tuesday February 19, 2002 8:53 PM CST
Emily had a sonogram of her gall bladder today. It seems that she has some thickening in the gall bladder and some sludging. The sludging should go away with time and the effects on the gall bladder are probably due to the amount of time that Emily had been on IV nutrition. The doctor said that some children do have to have their gall bladder removed and we hope Emily is not one of them. Her liver is doing better today. However, her magnesium and potassium levels are still unstable. We have started giving her supplements and she absolutely hates them. Those of you that know Emily personally know how good she is at taking pills of any size. However, the potassium and magnesium are apparently awful to take and she is struggling with them. Her seizure-like activity has improved and so has her neuropathy. We are still working on her motor skills and her strength. Patience......
Hope you have a good day.
Saturday February 16, 2002 7:23 PM CST
Hi everyone! Emily is doing the same today. Our biggest challenge now is to find things for her to eat. Her magnesium level is still low and she had to get both a magnesium and potassium infusion on Friday. We hope that this is not an extended issue for it will delay our hopes of going back home. Her liver tests are still coming back abnormal and we pray that we see some improvement in the near future.
I attended Kevin Situ's funeral today. It was a beautiful service and he was a very special child. We will miss him and will never forget him.
Jack has started answering back to us when we call him. It sounds like "UHHHHHH". This is the sound he makes when he sees us in the morning and when we say good-bye. If we call him for another room, he answers with this sound and searches for us. It is like playing marco polo, except that we say "Jack" and he says "UHHHHH" until he finds us. :)
We heard yesterday that a little girl named Salama passed away this week. Please remember her family in your prayers.
Hope you have a good weekend.
Thursday February 14, 2002 6:45 PM CST
Happy Valentine's Day! Emily had a good day today, too. She is tired of spaghetti and now she wants korean food again. This keeps us busy. Thank you to everyone who sent Emily the Valentine's day cards and gifts. Also, to our friends who have sent her pictures of their pets- she loves them! To Emily's friends in Ms. Scanlon's class and Ms. Kellogg's class, thank you for the sweet Valentine's day cards; she enjoyed the cards and that her friends are still thinking of her. :)
Jack discovered the speakerphone on the phone unit today and spent a lot of time turning the speaker on and off and on and off and on and off and on and off.... (really cute at first; kind of wears on you after a while)
Hope you had a good day.
Wednesday February 13, 2002 1:30 PM CST
Emily is doing better today. Jamie, her physical therapist, came over this afternoon and they played soccer in the living room. She really seemed to enjoy it and her coordination is getting better. Thank you God. Her vomiting has improved and her spirits continue to get better, too. Dr. K said that Emily looks better each week that she sees her. :) Emily's liver results are still troublesome but Dr. K adjusted her meds and we hope that this will help with the problem. Emily also moved around the hospital for awhile yesterday without her wheelchair and that is a great step forward (no pun intended) for her... We have been so blessed with the incredible doctors and nurses here. They care so much for our children.
Jack has now discovered the joy of stuffing things (cheerios, socks,...) into the VCR machine. We are just grateful that he has not gotten his fingers stuck in there (yet?).
We found out yesterday that Cassie (who was in the transplant unit with Emily and had to get a second transplant) was having lung problems with an infection in her lungs. We are so saddened to hear that she passed away this afternoon. She had a phenomenal spirit and her family is an inspiration to us all. Please pray for her family with us. Please also remember a little girl named Sarah-Morgan in your prayers as she is very sick with graft-vs-host disease and has been fighting hard for a long time. We pray that her body will have the strength to continue to fight.
We thank God for all of your support and prayers.
Hope you have a good day.
Sunday February 10, 2002 8:11 PM CST
Hello everyone. We received more test results today and the doctors are not concerned about one of the odd results that I mentioned in my last entry. Thank God. I actually started feeling stomach cramps again when I began letting my mind wander to where it shouldn't go. Unfortunately, Emily's liver test results show that the problem is getting worse. I had hoped that it would be better today. We had to take Emily in for a magnesium transfusion today and probably a potassium transfusion tomorrow. I pray that her liver function improves soon.... She is still eating a lot of spaghetti and only drinking Sprite. We did some arts and crafts projects today which is a nice change.
Jack now has six teeth (4 on top and 2 on bottom). At this rate, he should have his molars by the time he is a year old! (haha) Today, he pushed a tray right up to the coffee table, then proceeded to climb the tray and then used the tray to climb the coffee table. He looked very very proud of himself. :)
Thank you all again for your love and support. It helps us SOOOOO much to get through the hard times. Hope you have a good day.
Friday February 8, 2002 7:58 PM CST
Hi everyone. Today was a hard day for me and an OK day for Emily. Emily had a very good school day and she was more playful today. Her vomiting has gotten better with the help of zofran (a miracle drug for nausea). She is still eating and her choices lately have been spaghetti, salads, and hot dogs. As far as her body is concerned, she saw a physical therapist yesterday. Jamie (her physical therapist) said that Emily is extremely weak and will need a lot of therapy for a while. I am grateful that there are no stairs in this apartment since Emily is still too weak to climb them. We got some lab results back today and her liver test results are unfortunately off the charts. The doctor thinks that it is because of one of her medications but we are not sure. I pray and pray that her liver gets better soon. We also got some other lab results and I am so scared that I cannot even get myself to write down my fear right now. PLEASE pray that Emily is alright (that the lab results are not indicative of something very serious) and that her liver functions improve soon. We will know more on Sunday. Please also pray for Kevin's family as Kevin passed away this morning.
Finally, I will end with a story about our ever-active Jack. Jack surprised us today when he decided to splash around in the (clean) toilet! He was ready to dive in and go for a swim when John grabbed him. I guess it is time to buy some of those guards for the bathroom. I never thought we would need them -- boy was I wrong.
Thank you God for another blessed day with Emily and Jack.
Wednesday February 6, 2002 6:08 PM CST
Emily is still not feeling well. A lot of vomiting today and just pretty miserable. That, of course, did not stop her from wishing me a happy birthday first thing this morning with her sweet smile. She even said that I could watch whatever I wanted on TV today since it was my birthday. (WOW) :) I pray that she will be feeling better tomorrow. It is so hard to see her feeling rotten. I know that she is also tired of feeling this way.
Jack is still as active as ever and continues to keep me running. We are trying to teach him to blow kisses but he is not quite there yet. Emily fed him cheerios today-- Jack was thrilled and couldn't eat enough; Emily enjoyed feeding him and playing the role of big sister. :)
Monday February 4, 2002 8:33 PM CST
Emily had a harder day today. She threw up a lot today and really had a rough day. I don't know what is wrong. Then she started complaining about pain in her stomach and her hands. We have an appt with Dr. K tomorrow and hopefully she will have some answers. Despite her sickness today, she still had the spirit to laugh. We were watching Atlantis (the new movie) and she and I were watching one of the characters doing yoga. She asked me what he was doing and I explained it to her. Then I attempted to demonstrate the same move (lifting up the leg and wrapping it around one's head). I would be LYING if I said that I was able to complete this feat. I could only pull up my leg halfway before I felt it tingle and then go numb. I must have looked really funny because she started giggling and laughing. Then the amazing Emily proceeded to try it herself and succeeded. Then we both cracked up laughing and she did the yoga move a couple more times today.
Jack's new discovery is the refrigerator. He seems to have figured out that there is food in there and food makes him VERY happy. It seems that whenever the refrigerator door is open, he now speed-crawls to the fridge and tries to climb in! Jack is also standing on his own now! Emily also spent some time playing with Jack today.
I hope tomorrow is a better day for her. Thank God for another day with Emily and Jack. Hope you have a good day.
Friday February 1, 2002 3:36 PM CST
Hi everyone. Well, Emily continues to improve. Thank you God. She is still experiencing the seizure-like activity and neuropathy, as well as throwing up quite a bit (I think it is because of the decrease in steroids but am not sure) and lost some of her tiny appetite but her spirits improve more and more each day. Today she said SEVERAL times that "When I get better, I want" . . . . (a kitten, to go on a vacation to a beach somewhere, to go on a boat like when I was little, a baby rabbit, to ride a horse, . . .) Wow, I did not know if we would ever see the day when that would become a part of our conversation again. I love the fact that she is thinking about the future again and with hope. Hope is such a wonderful feeling for our children, isn't it? (not too bad for parents, either) Lately, Emily has been looking at herself in the mirror as she runs her hand through her beautiful growing hair. (It is about 3/4" now and brownish black.)
Jack is still entertaining us. Lately, Emily has been getting out of bed more often and when she walks into the living room to see what is going on, Jack squeals with incredible excitement and speed-crawls to her. He then attempts to latch onto her legs or swing from her IV. (This usually results in TWO crying children - Emily in pain and Jack in frustration.) Now she has started to scramble to the opposite direction whenever she sees Jack coming towards her. It is actually kind of amusing to watch her whip around as fast as her little body will allow as Jack tries to grab her before she can escape. (I guess it might be funnier to Emily if she could walk faster than Jack can crawl- one of these days...)
Emily is now going to the hospital on Tuesdays for treatment and on Fridays for a check-up. That is also very good news.
Well, I hope you had a good day and are looking forward to the weekend.
Wednesday January 30, 2002 3:36 PM CST
Good afternoon everyone! Emily was supposed to see a behavioral/neuro psychologist today but there was a problem with the insurance and we had the cancel the appointment at the 11th hour. Bummer.
We saw Dr. K yesterday. She said that Emily continues to improve. We cut back more of her medications and her TPN (IV food) has been cut back to 6 hours now (which gives her more time to move around freely). We are all waiting for the test results from her meetings with the neuropsychologist. Hopefully, we will be able to reschedule it soon. We are so fortunate to be surrounded by such amazing doctors and nurses here at Duke. They make all the difference and are great at always treating Emily like an important member of our meetings. She is never just an observer; always a participant.
One piece of news that we received yesterday was a shock. Emily had her audiology tests and we found out that she has lost some hearing in both her ears. At first I was really upset and then thought about it and decided that I am grateful that the damage is not worse...
Thank you for your prayers. Hope you had a good day.
Monday January 28, 2002 6:58 PM CST
Hi everyone. Emily is doing the same today (maybe a little bit better). She ate some spaghetti today and a lot of salad and she only threw up twice! She also sat at the table with us at dinnertime. She has not done that with us since the transplant.
Jack went to the park with John today and rode on the slide! He is fearless. No doubt he gets the stunt devil streak from John. :)
Hope you had a good Monday. And thank you God for Emily and Jack and for our wonderful friends.
Sunday January 27, 2002 5:20 PM CST
Emily continues to improve. She is still eating (and throwing up some of it) and is getting physically stronger every day. Her spirits continue to improve, too. We are taking her to see a neuro phychologist on Wednesday and will find out what else might be happening. (hopefully nothing) Jack is also scheduled for a viral battery test on Tuesday to see how he is holding up. He is also scheduled for his 9-month shots on Wednesday! I cannot believe he is 9 months already. (He was only 4 months when we came down here to NC.) He had his first taste of spaghetti and went nuts. To say that he likes table food is putting it mildly. He absolutely loves it. Emily ate a few pieces of a donut and hot dog today. She still enjoys eating salads and probably eats that several times a day. She is also really enjoying Korean food again (the spicier the better).
My next project is getting the insurance company to approve a physical therapist for Em. There is no question that she needs it but convincing the ins co may take some time...
Thank you for your continued prayers. We hope to come home within the next few months.
Friday January 25, 2002 5:27 PM CST
Hi everyone. We have good news and bad news. First, the good news. Emily was due to get a platelet transfusion this morning because her platelets were dropping. The threshold is 10,000 for a transfusion. It was 13,000 yesterday and we were positive that she would need it today. (She has always needed it in the past.) Well this time she didn't! She never ceases to surprise us. Her platelets were at 17,000 which means that her body has produced enough to save her from getting transfused.
The next piece of news is that we got the results from the EEG test. We found out that she is NOT having seizures! That is very good news. (But she is definitely suffering from neuropathy.) The bad news is that we don't know what is wrong with her. The doctor is going to change the medications around to try and pinpoint the problem. It is very likely that we will never know and that the problem will have to just resolve itself. At least Emily will be taken off of the valproic acid and dilantin (which make her very drowsy) since we know that these drugs are not helping her. It looks like the next few days are going to be rough as we weane her off of the drugs. Because she will no longer be drowsy, she will experience the FULL effect of the itching and seizure-like activity. Dr. K said to be prepared because it will be rough and difficult. Hmmmm... PLEASE pray that John and I find patience with the situation and with each other (we seem to be quickly losing it as our frustration levels escalate).
Emily ate more coffee ice cream, doritos and salad today. She threw up most of what she ate but it did not stop her from trying again and again. :) Jack accompanied me to the grocery store and the poor little guy has been so isolated from people that he was wide-eyed the whole time. He also grabbed on to the front of my shirt while he sat in the cart. He started to loosen up toward the end but then FREAKED OUT when the cashier started to dote on him and then proceeded to pull his pacifier out of his mouth. His eyes seemed to double in size and then started watering and then he just let loose and let all the patrons know exactly how he felt. Believe it or not, I started giggling a little - even when he is miserable and mad, he is still adorable and makes me want to squeeze him. Thank God for our children.
Thursday January 24, 2002 11:24 AM CST
Emily has had two good "emotional" days. She is smiling more and giggling. She surprised me even further yesterday when she said she wanted to draw something! Thank you God! It has been so long since she has shown any interest in drawing or painting. She ate more coffee ice cream yesterday and started yelling when she could not eat more (too much of it will cause stomach problems). I could not believe how much she enjoyed eating it. Today, she asked for salad with croutons, a hot dog and more coffee ice cream. Looks like I need to go shopping for food. :)
The doctor has decreased the level of steroids again and Emily is vomiting more again. I know that the steroids are not good for her; I just wish there was a way to weane her off of them without her body rebelling... We should get the test results from the EEG tests later today. I will post an update tonight if we get news. I pray that it will not be bad news and that there will be a good solution to the seizures.
Monday January 21, 2002 9:48 PM CST
Emily had good day today. She did not vomit and she laughed (yes, LAUGHED) at Jack today. Then I showed her a mood ring that she had received from the mother of one of her classmates. She had forgotten about it and became very interested in it. At one point, it turned a pretty shade of blue/green and she said "Cool!" with a smile on her face. I could not believe it. It has been so long since she has shown ANY kind of truly excited reaction to anything. Then to top it all off, she ate today (a scoop of coffee ice cream) and then actually walked to the refrigerator to find more food. Unfortunately, she started getting dizzy and had trouble standing and had to go back to bed. She is a bit confused tonight and is seeing double again but I am so thankful that she is showing signs of emotional improvement. On the clinical side, she is still having the seizures and awful itching. The itching was more prevalent yesterday and today. Tomorrow is the day that we start the EEG tests. We should have some results on Friday.
Thank you for your continued prayers for Emily.
I mentioned little Kevin some time ago. He is still in the hospital and I visited him last night. He has gotten worse and the doctors say that there is nothing more that they can do. His parents told me that he is deteriorating more every day. His parents are so strong and it broke my heart when I saw him. He is so cute and sweet and an AMAZING artist. I just cannot understand why this is happening. His parents are wonderful. Helen, Kevin's mom, was telling me stories about Kevin and the things that he used to do are the same things that Emily enjoyed doing. I kept looking at Kevin and hoping that he would get better. I wept for hours after I got home and found myself pleading with God to let him live. Please keep Kevin and his parents in your prayers. Thank you.
Jack has taught himself to blow a whistle. :) I started laughing when he did it. He seems to enjoy putting the whistle in his mouth and making a lot of noise. He is also getting very good at drinking out of a cup. What a blessing Emily and Jack are in my life.
Saturday January 19, 2002 8:20 PM CST
Good news: Emily is doing better today - no vomiting. She is still nauseous but keeping her meds down. (Thank you for your prayers.) We changed some of her medications to IV so that has also helped. Yesterday was a rough day and we spent a lot of time in the hospital, but that was yesterday and today is a better day. Her seizures and neuropathy have been pretty bad today but I expected it because she threw up all of her meds on Thursday.
We went to the hospital for her antibiotics and our favorite nurses were working (Julianne and Danielle). I also met a new doctor who was very kind to Emily. We are looking forward to Tuesday so that we can start the EEG tests. I continue to pray that it will provide the doctors with the answers they need so that they can effectively help Emily.
We are currently trying to schedule an appt with a developmental psychologist at UNC to gauge the level of emotional and intellectual damage that Emily might have suffered (if any). We are also working on getting a physical therapist for Emily.
Jack is still a wonderful distraction in our lives. Have I mentioned that he REALLY likes to climb into the fireplace? Thank you God for our children and for another day with Emily and Jack.
Thursday January 17, 2002 9:00 PM CST
Emily was pretty sick today. She was vomiting more than usual and could not keep her medication down. We finally had to give up because she was getting so sick. I think we are going to have to take her to the hospital tomorrow for IV medications since she does not seem to be able to take them orally... She has basically gone an entire day without her medications. Hopefully, tomorrow will be a better day.
Jack is always the happy baby. I took him out to the store today and he was so excited to get out. (Poor thing never gets out.) He just kept looking all around and trying to grab whatever he could get his hands on.
Jack loves one of Emily's stuffed animals (a huge laborador puppy) and often kisses it and lays his head on its tummy. He thinks it is real. :)
Thank you for your prayers for Emily. I pray that her nausea and vomiting stop and that her EEG test on Tuesday will provide the doctors with insight and solutions.
Hope all of you have a good day.
Wednesday January 16, 2002 7:32 PM CST
Hello everyone. Today is John's birthday and he got a nice "Happy Birthday, Daddy" from Emily this morning. I took Emily to the hospital to meet with her teachers. (Duke has a hospital teaching program for their patients. Isn't that great?) She does not like to go anymore, but we insist on taking her because it is a bit of normalcy in her life and she needs to know that we believe she is well enough to participate. Yesterday and today have been tougher for Emily because her itching sensation is getting worse and so are her seizures. I was so frustrated and stressed out last night after John got home with Emily. The doctors still do not know what is causing her discomfort and seizures. It is upsetting to watch her go through this without a hope of how to stop it. Now the plan is to attach her to an ambulatory EEG machine for 48 hours to monitor her brain activity, with the hope of determining what is happening in her head. The neurologists are now working directly with Dr. K and I pray that we will get some answers. The test will take place next Tuesday and we should get some answers (hopefully) on next Friday. I cannot adequately explain the extreme frustration and anxiety that I felt last night. Please please pray that the doctors will find the answers soon and that there is a way to help her. I cannot stand to see her suffering like this. She must have hurried herself into the bathroom over 15 times today with no success. She finally started wailing and asking what was wrong with her...
On a more positive note, Dr. K said that Emily is producing platelets and red blood cells! This is good news and we have been waiting a while for her platelets to start producing again. Emily also showed some interest in making John's birthday cake but eventually lost the desire to help (when the burning/itching sensation became unbearable). I think that it is wonderful, though, that she is starting to show interest in something. She also grinned today when I said something that she thought was amusing. :)
Please pray that the doctors will find the way to stop Emily's discomfort and seizures. Thank you for your love, support and continued prayers.
Monday, Dec 14, 2002 10:08 p.m.
Emily had a harder day today. The drug that controls her neuropathy (itching and burning sensation) was not at the right level yesterday and today and she was pretty uncomfortable. She also had several seizures and bouts with nausea. She started complaining about her vision this evening (she was seeing double) and I called the clinic. They were not overly concerned and said that we could wait until tomorrow to check Emily. Her spirits are still OK and she reached out and gently rubbed Jack's cheeks this morning. He was SO excited that he tried to climb up on the bed and grab her. Unable to do so, he settled for sucking on her toes and she was not happy about that (I think he took a little nip, too!). :)
Hope you have a good day!
Sunday, January 13, 2002 at 08:32 PM (CST)
Emily did pretty well today. She only had one seizure that we know of but her neuropathy reared its ugly head this afternoon. We gave her medicine to make her sleepy to help her cope with the pain. She received a Fashion Polly from a friend and she LOVES it. She showed more interest in that toy than she has shown in months! I was just thrilled to see it. Also, she has not had a platelet transfusion for five days now and we are hoping that she is producing platelets (which would be very good news).
We have started her on the antibiotics for her sinus infection and are watching her carefully. I took Emily to the clinic on Saturday and she had kind of a rough time but was happy to be there with me. :) Our nurses were Sue and Jan - both of them were great. We really miss the nurses in the transplant unit, though. I saw Kim and Kelly when I stopped by to see Cassie (a transplant patient who is in her second transplant; please pray with us for the success of this 2nd transplant). It was refreshing to see them again. Both of them are so positive and Emily really liked them. There are so many fantastic nurses on that unit (Amy, Lori, Andrea, Catherine, Andre ...). What a blessing they are to the kids and the parents.
Jack continues to make us laugh. :)
Friday, January 11, 2002 at 07:21 PM (CST)
Yesterday was day 100 post-transplant! Wow, we have been down here for awhile and so much has happened since April when Emily was diagnosed with the relapse. I cannot believe we made it this far. Thank God for this day.
This week has been so busy that we almost forgot about day 100. Emily has had A LOT of tests this week and we got the results back. Her CT scan showed that her sinus infection has gotten worse and the doctor has prescribed another medication for her. She also has cerebral atrophy of the brain which was probably caused by all the steroids. She failed her pulmonary function test, too. (She just did not have the strength to take the test.) Except for the worsening sinus infection, the doctors are not worried. I pray that the medication takes care of the sinus infection and that it does not become serious. Overall the news is not great, but everything is relative in life, and it could always be worse. I am grateful for another day with Emily.
Shannon passed away yesterday. The news shocked me and I cannot imagine what her parents and sisters must be feeling. I pray that they find comfort and peace during the time ahead.
Jack is still zooming along and keeps climbing (and falling) on whatever he can find. He has more bumps on his head than I am comfortable with; my dad wisely suggested a helmet for him. :) I am beginning to wonder if I should take this suggestion seriously.
Hope you have a good day.
Wednesday, January 09, 2002 at 07:15 PM (CST)
Hi everyone. Emily is the same today (still throwing up and still having seizures). I pray that the doctors will find a way to stop the seizures and vomiting soon. It is so hard to watch. On a happier note, she is becoming more vocal and I am glad to see it. Emily was sitting on the couch in the living room and Jack was so excited to see her. He bolted right over to her (I turned around for a second and zoom!) and then I heard Emily protest. I turned around and he had grabbed onto her leg with one hand and her IV with the other, and he was ALL SMILES! :) He did this several times and Emily had no problems telling me each and every time. I loved hearing it.
Jack is so active these days and he is our little explorer. If it can be moved, he will try to move it and jam it into his mouth. That includes cords, phones, books, toys, the computer mouse, Emily's body parts, Emily's clothes (while she is still wearing them), the Christmas tree, the laundry basket.... Nothing stops this boy and he is so persistent. He gives babyproofing a whole new meaning. By the way, he absolutely ADORES John (which makes John a very happy daddy).
On a sad note, please pray for two very precious children. A girl named Shannon is having a very very difficult time. She and her family could really use the prayers. Also, a boy named Kevin is in need of prayers. He has a fungal infection in his brain and the infection has gotten worse. His parents have become very good friends of ours and just like Shannon, he is a very sweet child. Kevin is only 8. My heart breaks for these children and their families. Please remember them in your prayers. Miracles can happen. I have seen it. I pray that God gives them strength and that they have comfort during this extremely difficult time.
I went in to check on Emily a few minutes ago and found her sleeping peacefully. I just looked at her and then wanted to kiss her but did not want to disturb her. So I kissed her feet over and over and over again. Thank you God for another day with Emily.
Sunday, January 06, 2002 at 04:45 PM (CST)
Emily is no longer lethargic and has become more alert. Unfortunately, she is now throwing up often and moaning a lot. We have talked to the doctor and she does not think it is serious. We increased her steroids and hope that this will help.
On a happy note, Emily has started showing more interest in Jack (which is good because he is REALLY interested in his big sister).
Friday, January 04, 2002 at 02:26 PM (CST)
Well, we got 10 inches of snow down here! It seems like the whole city has shut down- I've never seen anything like it. Despite the tricky driving conditions, it looks beautiful outside. Emily saw the snow and asked when Santa would be coming.
She is having a hard day today. She is really weak and her speech is slurred. She fell down when she got out of bed and she is sleeping a lot. I don't know what is wrong with her but it might be the high doses of anti-seizure medicine that she is taking. The good news is that she has not had any seizures today so at least the medicine seems to be working. After she threw up and said she felt yucky, I finally decided to e-mail Dr. K. for advice....
Emily is scheduled for a CT scan and echocardiogram next Tuesday and Wednesday to see what is happening inside. I will update with news as soon as we find out the results. I pray that the news will be good.
Wednesday, January 02, 2002 at 08:20 PM (CST)
Hello everyone. John and Emily had a tough day at the hospital today and Emily was very happy to get home. We are still working with the medications to try and help her through the seizures and itching/burning sensations.
I asked her for a smile today and she gave me a beautiful smile! (She probably did not feel like smiling but she did a good job of faking it.)
I received an e-mail several weeks ago and here is an excerpt of it that I wanted to share with you. It really touched me. . .
I wish you enough sun to keep your attitude bright.
I wish you enough rain to appreciate the sun more.
I wish you enough happiness to keep your spirit alive.
I wish you enough pain so that the smallest joys in life appear much bigger.
I wish you enough gain to satisfy your wanting. I wish you enough loss to appreciate all that you possess.
I wish you enough "Hello's" to get you through the final "Good-bye."
I hope all of you had a good day. :)
Kathleen
Tuesday, January 01, 2002 at 08:33 PM (CST)
Happy New Year! Today was a good day. Only one seizure. She did throw up a few times but did not seem bothered by it at all. Today is also post-transplant day 91! Unbelieveable.
She woke up at 5:00 this morning and was wide awake. Apparently, she did not feel like sleeping any more and she did not want me to sleep either. She pulled my covers away so that I would wake up. It worked. :)
It is good to see that she is starting to show some of her clever self again.
I looked at Emily today and she looked so cute to me. Her hair is fuzzy and growing in quickly. Her eyelashes are curling up due to the way she positions her head when she sleeps.
Emily is still on IV nutrition and is not eating yet. We are trying to coax her into it without pressure. No success yet but we will keep trying.
Well, I hope all of you had a fun new year's eve and a restful new year's day. I will write again soon.
Kathleen
Monday, December 31, 2001 at 08:28 PM (CST)
Hello everyone. Unfortunately, things have not gotten better. Emily has been suffering the last few days from really bad itching/pain in her private areas. Nothing that we are giving her is helping and she moans and wimpers a lot. We just have to hope that it ends soon as there are no drugs to make it stop. John and I are not doing any better. If anything, it continues to get worse and I worry about the impact this will have on Emily and Jack....
Thank you to all of you wonderful people for the prayers, letters, emails, guestbook entries and calls of support. I realize that these journal entries can be depressing and difficult to read sometimes. I also know that they have become much more personal than I ever planned. However, the entries help me to cope with what is happening and I feel like I am writing to friends and loved ones. Thus, I suppose I am not holding back as I might under normal circumstances.
Thank you for your support and prayers. It has been a godsend and when I feel alone and Emily is watching me and I am unable to think of something positive to say to her, I remind her of all the people who love her and are praying for her and want her to get well.
Thank you to my family for your love, patience and understanding.
I hope that all of you have a peaceful new year, with lots of love, happiness and (of course) good health. God bless you and I'll "talk" to you next year!
Saturday, December 29, 2001 at 06:37 PM (CST)
Today was a frustrating day. Just in the last hour, Emily has gotten up 8 times to go to the bathroom with no success. She is unable to empty her bladder unless it is REALLY full, but she still feels like she has to go. Then she had an accident in her bed. Then after giving her a bath to clean her, she had a few seizures. I feel like I am about to go crazy with frustration. I yelled at her and then finally explained to her that she is not doing anything wrong. It is just that I love her and want her to get better so badly that I get upset. I don't know if she understood. To top it all off, John and I are at each other's throats. It is just out of control and I am so incredibly frustrated. I am SO angry that she is so sick. I am so frustrated with how long this is taking and the fact that we still have a long way to go. Augh! Then I feel so guilty about the fact that I feel this way. I should just be grateful and thank the Lord above that I have to think about these things. I can only imagine how bad Emily must be feeling. I am sure that she hates wearing diapers again. I am sure that she also wishes that she could be "normal" again and that she did not feel so crummy all the time. I know that she is not exactly thrilled about the fact that she has to share her time with Jack. I am sure that she does not enjoy listening to John and I yelling at each other all the time... May God give me the strength to stay strong for her and to find patience again.
I hope tomorrow is a better day for all of us.
Wednesday, December 26, 2001 at 10:06 AM (CST)
Happy holidays everyone! It was a quiet Christmas. Emily actually showed interest in opening her gifts and found the energy to open a few of them. She liked the gifts and when she was done opening them, she asked where the rest of her gifts were. :) Jack was more interested in the bows and wrapping paper.
Emily had two small seizures yesterday and was able to hold her head up for a longer period of time while sitting on the couch. I keep thinking that she is looking better every day. . . We asked the doctor about going home at the end of February but she said it was too soon to say. I guess I like to "forget" that Emily is not out of the woods yet. Even after we are home, she will have to be isolated for one year post-transplant and if she gets sick, we will probably bring her back down to NC for Dr. K to see her. I don't mind the trip because I know that Emily will receive the care that she needs down here.
I cannot remember if I mentioned it earlier but we did start Emily on anti-depressants. It will take a few weeks to see if they help her but I am hopeful.
I hope all of you had a very merry Christmas!!!
love from john, kathleen, emily and jack
Saturday, December 22, 2001 at 07:15 PM (CST)
Hi everyone. Well, I took Emily to the hospital for her treatments (her platelets, medicine and potassium). She was not happy about going but was pleased to hear that I was taking her. I think John was happy for the break, too. She is doing the same. I talked to Dr. Kurtzberg (still as wonderful as ever!) about anti-depressants for Emily and we are going to start her on them tonight. I hope they will help her to find herself again. . . She cries so easily these days. She cries when she has to get up and go to the bathroom. She cries when she has to go the hospital. She even cried when Dr. K asked her about Christmas (because she wanted to go home). I am so grateful that Emily is here with us at Christmastime.
Her hair is starting to grow back and it feels like silk. It is fine and very black (unlike the last time, when it was light black with brown hightlights). I told her how pretty her hair was but she did not care.
Jack continues to crawl around and tries to put everything into his mouth. He's adorable and absolutely LOVES his daddy. He lights up like a Christmas tree and smiles so big when he sees John. :)
I could go on forever with thanks to all the wonderful people who have sent us well wishes and gifts to Emily and Jack, and most importantly, who continue to pray with us that Emily has a full recovery. Your support and compassion give us strength and help us when we feel alone. We are so fortunate and blessed. I pray that one day I will be inspired and figure out a way to thank all of you for what you have done and continue to do for Emily. Thank you also to the fantastic nurses and doctors at Duke. We are so happy to be here and are grateful for the care that you have provided to Emily.
I hope all of you have a peaceful and happy holiday and Merry Merry Christmas! God bless you and your family.
Wednesday, December 19, 2001 at 09:35 PM (CST)
Emily is doing the same. Her seizures have not improved and neither has her short-term memory. Incontinence is now rearing its ugly head again and we do not know why. The good news is that she ate a few pieces of watermelon today! (I wish we could provide more good news.)
We are going to talk to Dr. Kurtzberg on Saturday about starting Emily on anti-depressants. Hopefully, even if she does not genuinely feel better, her body won't know the difference and maybe it will help.
We are trying to stay optimistic about her recovery. Her body has been through so much over the last 4 years and it is not over yet. We continue to hope that the seizures stop and that her brain will not be damaged permanently from them. I really think that if we can get them to stop, she can truly start to heal. Currently, we keep her bedroom extremely warm because whenever she feels the least bit cool, she has a seizure (sometimes one every hour). I guess her body cannot regulate her temperature properly. Nevertheless, the rest of the apartment is a decent temperature (but too cold for Emily) and so she is not inclined to leave her room because she does not want to put on sweats/pants/sweaters. . . (which is the only way to keep her temperature up). If the seizures stop, then she may be more willing to come out of her room, which may help with the depression, which may help with the rest of her recovery. . .
Thank you for checking in on Emily. Sorry that it has been a while since my last entry (life continues to be pretty busy).
Saturday, December 15, 2001 at 07:03 PM (CST)
Hello everyone. Emily's condition has not changed since the last entry. Her seizures and temperature fluctuations continue. She also forgets where she is sometimes and gets lost in the apartment. (This is hard to watch as the apartment is not very big.) However, she is sleeping a little more and she has started talking a little more as well. In fact, when she is yelling for me from her room, her lungs sound pretty great. :) I remember when she did not want to leave the hospital and now she cries when we tell her she has to go for her transfusions, medications . . . I like to see her showing some emotions again. The doctor changed her schedule to every other day at the hospital because of Emily's mental health. I guess that there has not been a noticable improvement and she thought it best to skip a day and see if Emily's spirit improves. She wants to put Emily on anti-depressants. John is still hesitant because she has so many drugs in her body as it is.
Jack is moving around like a pro. He ate cheerios for the first time today and he has a bouncy seat that he just loves. He continues to think that it is fun to grab Emily's face and suck on her shirt.
Please pray with us that Emily's seizures will stop soon and that her brain will start to heal. I think (hope) that once this is resolved that Emily will feel better, walk better, look better. Thank you for continuing to care and pray for Emily.
Tuesday, December 11, 2001 at 10:33 AM (CST)
Emily slept few hours last night. She did have some problems when she woke up but what a blessing a few hours can be. She still asks for Jack and makes an effort to get out of bed so that she can see him. She is so gentle with him. Her favorite thing to do is to pat him on the head. He seems to like it and tries to pat her hand. He squeals at her a lot and my heart just melts when I see the two of them together. They are good for each other.
Emily is as thoughtful as ever. Last night when she woke me up to get her a drink, she apologized for having to wake me up and thanked me for getting her a glass of water (she thanked me before I even got her the water). I cannot get over how sweet she is, even when she is feeling awful.
Emily will see Dr. Kurtzberg today. John is, of course, armed with my dozens of questions that I have for her. Hopefully, he will come home with an adjustment in her medications that will help to combat the temperature fluctuations and seizures that she is still experiencing.
Sunday, December 09, 2001 at 09:20 PM (CST)
Emily's complications have not improved despite her discharge from the hospital. She is still awake at night and it has been and continues to be a struggle for me as the lack of sleep is catching up with me. I get up at least seven times throughout the night either to get her a drink, take her to the bathroom, change her bedsheets, or help her get back to sleep. Since Jack's naps last for about 1/2 hour and he only takes two naps during the day, I am having to get creative in trying to get some sleep. It feels like the work never ends and the chores around the apartment just continue to multiply. I am so tired but very grateful to have Emily home.
Her spirit has improved a little and she is still excited by Jack's presence. He is doing a great job of trying to annoy her by pulling on her clothes and grabbing at her head. :)
Thursday, December 06, 2001 at 08:58 PM (CST)
Hello everyone. Emily is home with us now and I have mixed emotions. We are thrilled to have her home but there is so much to do and I miss some of the security of being on the transplant unit. I actually started crying when we left the transplant unit. I don't know what came over me. I feel disconnected from the parents and I also miss the nurses that we have gotten close to and relied upon.
It is wonderful to watch Emily and Jack together. He has been struggling to really crawl for a while now and when we got home, Emily climbed into bed and we put Jack down next to him. He then CRAWLED for the first time to Emily! It looked so natural that I thought he had been doing it for a while. In fact, John said that it was the first time. Amazing. Then Emily (who hates to walk) wanted to get out of bed to see Jack in the other room. She got up several times last night because she wanted to see Jack sleeping.
It will take some time for me to get used to the administration of Emily's medications orally and through the IV. There is so much to do and she is still not well. Her rash has spread a lot on her body. I panicked and Dr. Kurtzberg (our hero) came by to see the rash before our discharge (despite her very hectic schedule). We will just have to keep an eye on it. Emily has also been suffering more often from the neuropathy (when she itches uncontrollably and has memory lapses). We don't know when this will stop but it seems to be getting worse instead of better. Emily's nights and days are still switched and I am now functioning off of about 10 hours of sleep in the last 72 hours. I am now experiencing the full effects of sleep deprivation (agitation,irritation, speaking only when necessary, . . . -- John is just loving this side of me). I am hoping to catch up on some sleep over the weekend but am not counting on it as we are taking Emily to the hospital every day. For now, John is taking her to the clinic every day (as I cannot carry her when she gets tired). I will probably take her to the transplant unit on the weekends to give him a break.
Thank you for your prayers. We hope Emily gets better soon from the neuropathy. I know she is not out of the woods yet but I pray that we are on our way.
Tuesday, December 04, 2001 at 10:44 PM (CST)
Hello everyone. If Emily's fevers continue to decline, we will headed home tomorrow. Tonight has been rough. She has had really bad itching episodes and is not very happy right now. She has started to ask about going home and I told her that it might be tomorrow and she said that she was happy about that. Then when I said "apartment," she asked why we would need to keep the apartment. Apparently, she thought that we were going back home to Maryland. Boy was she disappointed when I told her that that would not happen for a few months.
I am sorry that the journal entries have been so sad lately. After the recent deaths, I have become really unnerved and every thing that could potentially become serious with Emily has me pulling out my hair. Death has suddenly become very real to me and I am struggling with how to deal with it.
We met with the discharge nurse today. There is a lot do when we get home (medications, blood draws, IV feedings, long days in the clinic, transfusions, etc.) I am beginning to think about what John and I are going to do. We really need him here as there is no way that I can do it all with Emily and Jack here. Dr. Kurtzberg had told us at the beginning that it would be stressful after discharge due to all the tasks that we would have to perform and that we would need to help each other. . . . We will have to think of something soon.
I visited the clinic today and saw a fellow transplant patient who is doing fantastic! His name is Bernhard and he is truly a miracle child. He was in the unit over 120 days and spent WEEKS in the ped ICU. We were in the unit with him and I could not believe my eyes when I saw him this afternoon. He looked incredible and it was uplifting to see him. I could not be happier for him and his family.
Monday, December 03, 2001 at 05:33 PM (CST)
Emily has sinusitis and has had some fevers lately. Her discharge has been delayed to Wednesday or Thursday. I am disappointed but would rather be here than have to come right back in. I am getting a bit stressed out here too. I snapped at Emily this evening and felt really bad about it. She could not help the itching and the temperature fluctuation but I still got frustrated with her. I guess I want her to be healed so badly and I desperately miss the way that Emily used to be. Patience has never been a strength of mine and I am still working on it.
Thank you all for your prayers for Emily and your supportive e-mails re the last couple of days. We will shoot for Wednesday or Thursday for discharge and that her infections are not serious.
Monday, December 03, 2001 at 05:33 PM (CST)
Emily has sinusitis and has had some fevers lately. Her discharge has been delayed to Wednesday or Thursday. I am disappointed but would rather be here than have to come right back in. I am getting a bit stressed out here too. I snapped at Emily this evening and felt really bad about it. She could not help the itching and the temperature fluctuation but I still got frustrated with her. I guess I want her to be healed so badly and I desperately miss the way that Emily used to be. Patience has never been a strength of mine and I am still working on it.
Thank you all for your prayers for Emily and your supportive e-mails re the last couple of days. We will shoot for Wednesday or Thursday for discharge and that her infections are not serious.
Sunday, December 02, 2001 at 08:24 PM (CST)
I had dream about Morgan last night. I could not get her out of my mind and have been thinking about her all day. I did not mention in my earlier entry that I saw Morgan about 1 hour after she had passed away. I went to see Gina and she was cleaning Morgan's body. My mind would not allow me to accept the fact that she was gone. I have never been to a funeral or a wake. I am ashamed to say that it was hard for me to stay strong for Gina and I had to keep telling myself that Morgan's body was there but that her spirit had moved on. Her nose started bleeding when they moved her to put her shirt on. The doctor said that when a person passes away, the wounds that were healing start to break apart again. I hope that Gina, Mike and Michael find peace and comfort in the days ahead. She is a great mother and fought so hard to save her daughter.
Someone asked me how I could walk in the room after she passed away when I knew that I would be upset. I did not think about it. I just wanted to be there for Gina. The pain she felt had to be unbearable. My heart was breaking for her and her son and husband. I had to do it. Morgan was a special child and she and her family have changed my life.
Emily's MRI results showed improvements re her seizures. However, she has inflammation in her sinuses. She has been complaining of her ears popping and has been sniffling for weeks now. She is now on antibiotics. I pray that it is not and does not become serious.
I talked to Emily about going home. She said that she does not want to leave the hospital. She is scared. The nurses and doctors have told me that this is not uncommon as the kids feel secure in the hospital. I know how she feels.
Have I mentioned that Emily is no longer incontinent? :)
We will probably delay the discharge to Tuesday due to John's illness and some of Emily's recent symptoms. I'd rather wait and be sure than rush out of here.
Sunday, December 02, 2001 at 11:07 AM (CST)
It was a worrisome night for me. Emily started getting a rash on her body; she kept complaining of her bottom itching; she had a fever and then her blood pressure started to rise. I am getting really nervous again. Please pray with me that none of these symptoms are indicative of something serious. Thank you all for your prayers.
Saturday, December 01, 2001 at 09:09 PM (CST)
Emily is doing the same today. The doctors are still planning on Monday. We are still waiting for the MRI and cultures to come back in.
Morgan died today. I don't know what else to say except that there are a lot of very sad people today. She was loved by many.
Friday, November 30, 2001 at 10:08 PM (CST)
I just wrote today about Morgan and her battle. I went to visit her at the Ped ICU this evening. It was really hard but I am glad that I did it. Her parents and her brother are absolutely incredible. I was so humbled by their strength and love for Morgan. Their love for her just filled the room. She is a beautiful girl and I cannot seem to accept the situation. I was just waiting for her to open her eyes and look at them. . .
Another little boy named Charlie died this afternoon. It was sudden (he got sick last night). It is a scary time on the unit. I started to come unglued as I was talking to some of the parents during dinner. Then I got scared and had to talk to the nurses about a concern I had about Emily. I am sure that I acted like a complete moron and am embarrassed about my complete lack of composure. I guess I had not realized how much this week has affected me until that moment. I just needed to step away and go back to Emily and tell her that I love her. I must focus on Emily and remember that every child is different.
I continue to be in awe with the doctors and the nurses here and their great capacity to love these kids and do what they do every day.
Emily took her walks in the unit today without her IV pole. She seemed really pleased about this. She is also speaking sentences now and smiling periodically. She had an MRI today and a few more tests. We should get the results tomorrow.
I pray for a miracle for Morgan tonight and I pray that Emily stays strong and gets through this with no more complications, is cured and lives a long, beautiful and healthy life.
Friday, November 30, 2001 at 10:44 AM (CST)
Yesterday was a very good day for Emily. Still has the same symptoms but I got a couple of smiles and giggles out of her. Then we woke up today and found out that she is experiencing great discomfort in the same place as before and was miserable. The doctors are testing her for infections. I pray to God that it is not serious.
I have previously mentioned a wonderful mom here that has made me laugh and smile during some very frightening times. I found out this morning that her daughter, Morgan, is not improving and that the doctors have recommended turning off her respirator. I thought my heart would break when I heard the news. Gina said that today is Morgan's 100th day post-transplant. That is the day that all the parents usually look forward to. I cannot believe what is happening here. Gina is distraught and I feel so helpless. I wish there was something that I could do to lessen her pain and suffering. I started shaking as I walked back to Emily's room and I am trying so hard to fight the fear.
Wednesday, November 28, 2001 at 09:33 PM (CST)
Hi everyone. Well, I have a lot of news. Some good. Some bad. Let's start with the good. Emily is now urinating on her own (no more incontinence). She is still bleeding from the bladder and this will probably continue for a few more months until her body starts to produce platelets on its own effectively. The doctors are tentatively scheduling her DISCHARGE for Monday! I am not getting too excited about it yet as no one seems to leave when they are expected to leave. . . Please pray with us that there will not be any more complications for Emily.
Last night, a little boy named Matthew died. He was in the room next to Emily and engrafted in record time. He died of graft vs. host disease. Then this evening, a boy named Reggie suddenly stopped breathing and passed away. It was completely unexpected and all the parents on the unit are shellshocked. I am really scared. I could only hug Emily when I heard the news. Reggie looked great last week and they were talking about his discharge. How does a child go from healthy enough to go home to passing away in a matter of days? It is just too horrible. I heard one of the moms say that she did not think that she could leave her child for a minute. I am starting to feel the same way.
I told another mom that the doctors are thinking of discharging us on Monday and she said to "Get the heck out and run as fast as you can." Even after Emily is discharged, she will still have to stay at Duke for several months as she is not out of the woods yet.
Thank you God for staying with us and for continuing to touch and heal Emily. Thank all of you for caring about Emily the way you do and continuing to be there for us.
Tuesday, November 27, 2001 at 12:26 PM (CST)
Hello everyone! Emily's white count is OK and the doctors have started to wean her off of some of her medications. She has become more alert which is good. We had a urology consult yesterday and the doctors did not see anything serious re her bladder. We will keep on watching her incontinence.
I tried to get Emily involved with the arts and crafts projects today but she was not even remotely interested. I am hoping that her spirits will pick up soon.
John is now sick with a virus and he is banned from the unit. I like to get some relief during the day but it looks like I will be on my own for a while. Emily smiled and said "yeah" when I told her that I would have to stay with her because daddy was sick. :)
She did not sleep until 4:30 this morning. I was up with her because we had to run a few tests in the middle of the night. My goal is to sleep whenever she sleeps today. I am also eating vitamin c pills like candy to try and ward off any colds/viruses.
Well that is it for now. One of Emily's favorites nurses is on for tonight. For some reason, Emily sleeps better when she is here so I am REALLY looking forward to seeing her.
Sunday, November 25, 2001 at 10:39 AM (CST)
Hello everyone. We are still watching Emily's liver function. No new news except that Emily's white cell count has dropped significantly. The doctor on the unit today has lowered her dosages of neupogen (which promotes the growth of white cells) and I am worried because he seems to be acting contrary to what I thought Dr. Kurtzberg had wanted to do. (I really hope that I am wrong about this.)
Thanks for checking in on Emily and I will write again soon. [and thanks to the "moms" for the balloons :) ]
Friday, November 23, 2001 at 03:05 PM (CST)
We hope you had a good Thanksgiving.
Emily is still suffering from memory lapses with her temperature fluctuations and bladder complications. The doctors have ordered an ultrasound for her liver and bladder to see if they find anything. Emily's bilirubin and enzyme levels have been rising and we are beginning to worry about graft vs. host disease (re attacking the liver). I pray that this is not the case and that her organs stay strong. Please pray with us.
Emily continues to get spunkier. She is drinking more and ate some jello the other day. (She is also walking greater distances.) She has started to vomit more frequently. No one is sure as to why this is happening.
We talked to the doctors about discharge from the unit. We are not sure when that will take place as the other problems have not yet been resolved. We understand that after she leaves the unit, she will still have to stay in NC for several more months as she is still at serious risk of life-threatening complications until around 100 days post-transplant.
We keep praying and hoping for a complete and speedy recovery.
Tuesday, November 20, 2001 at 10:41 AM (CST)
The test results are in and we found out that the white cells are donor cells! THANK YOU GOD!!! We are so happy with the news.
Emily is still bleeding from her bladder and we hope that heals soon (we heard that it can likely take several months). She is still having difficulty moving around but we are working with her on that. I don't know when she would get out of the unit but honestly try not to think about it as we never know what will happen tomorrow.
Thank you all for your prayers! I read the guestbook and e-mails and we were moved by the outpouring of love and support. Emily is blessed to have so many people that care for her.
Monday, November 19, 2001 at 12:28 PM (CST)
Emily peed (spelling?) on her own today!!!!!! They took our the catheter this morning and she has urinated three (yes three!) times on her own. THANK YOU GOD! Her white cell count jumped from 4.1 last night to 5.0 this morning!
Let's pray that those test results come back with good news tomorrow. Thank you all for your prayers. What a blessing to get that catheter out of her.
Sunday, November 18, 2001 at 05:55 PM (CST)
This evening Emily's white cell count is 4.1. That is good. We hope to get the test results on the cells on Tuesday. Tomorrow we will remove her catheter again and I hope to God that she is able to urinate on her own so that they will not have to reinsert it. I don't know if I can stand to watch them do it again. It is so painful.
It is a sad day on the unit. A little boy died this morning. Sadly enough, Mauricio was the only child on the unit that Emily knew and remembered. Just last night when we were walking in the halls, she and I were talking about him. It is hard to believe that he is gone. One of the parents on the unit wrote "GOD is good" on her child's door because his white cells came in so quickly (8 days). I thought about Mauricio's parents and what they must have been thinking and feeling when they saw that today.
There were nurses crying today. I did not see it before because I was not here in the unit when the other children passed away. I have been thinking about how much I admire them for their compassion for our kids and their courage to love them, knowing that there are no guarantees.
Saturday, November 17, 2001 at 09:31 AM (CST)
I received this today from another parent whose child has ALL. I thought it was beautiful.
TO OUR CHILD
Just for this morning, I am going to smile when I see your face and laugh when I feel like crying.
Just for this morning, I will let you choose what you want to wear and smile and say how perfect it is.
Just for this morning, I am going to step over the laundry and pick you up and take you to the park to play.
Just for this morning, I will leave the dishes in the sink and let you teach me how to put that puzzle of yours together.
Just for this afternoon, I will not yell once, not even a tiny grumble when you scream and whine for ice cream and I will buy you one if the ice cream truck comes
by.
Just for this afternoon, I won't worry about what you are going to be when you
grow up or second guess every decision I have made where you are concerned.
Just for this afternoon, I'll let you help me bake cookies and I won't stand over you trying to fix them.
Just for this afternoon, I will take us to McDonald's and buy us both a Happy Meal so you can have both toys.
Just for this evening, I will hold you in my arms and tell you a story about how you were born and how much I love you.
Just for this evening, I will let you splash in the tub and not get angry.
Just for this evening, I will let you stay up late while we sit on the porch and count all the stars.
Just for this evening, when I run my fingers through your hair as you pray, I will simply be grateful that God has given me the greatest gift ever given.
I will think about the mother and fathers who are searching for their missing children, the mothers and fathers who are visiting their children's graves instead of their bedrooms, and the mothers and fathers who are in hospital rooms watching their
children suffer senselessly and screaming inside that they cannot handle it anymore.
And when I kiss you tonight, I will hold you a little tighter, a little longer.
It is then, that I will thank God for you and ask him for nothing except one more day...
Friday, November 16, 2001 at 07:47 PM (CST)
Emily's white cell count has jumped from 1.7 (yesterday) to 2.2 today! Yeah! I have met some more parents on the unit and they are very nice. Today I had a chance to go out and get some air with a fellow Notre Dame alum. It was wonderful. I have been so tired because I have not been sleeping at night (Emily is now WIDE AWAKE at night) and it was refreshing to get out.
Emily is getting spunkier and more alert. I made mistake when drawing a picture today and she had no reservations about correcting me. Then we were watching a movie and she said that a funny part was coming up and giggled. One of her favorite nurses is taking care of her tonight and when she mentioned bringing pictures of her sister in her halloween costume, Emily smiled! She still gets mad at me when I make her walk, but she is walking taller and straighter now. Her breathing is still labored but I am hoping that once she gets her strength back, that will also improve.
Thursday, November 15, 2001 at 09:34 PM (CST)
Today was a good day. Emily's white cell count is up to 1.8. She stayed awake most of the day so hopefully will sleep tonight. Last night was rough and she did not sleep at all. I hope tonight is better. I am starting to feel worn down and will be glad when John and I can switch places.
A friend came down to visit Emily today and I was so glad to see him. He made both of us very happy. :)
Wednesday, November 14, 2001 at 08:23 PM (CST)
Emily's white cell count is at 1.4! That is good news. Now we wait for the test results. She is still getting some HIGH fevers at night. I am getting worried about it. Re the bleeding, the doctors have raised the platelet threshold to 75,000 for transfusions. Hopefully, it will take care of the bleeding. She is becoming more alert and did some homework with me this evening. She also said something smelled good when the dinner tray arrived. When I opened up the tray and she saw spinach, she said "Ewwww" and did not want anything to do with the food. :)
I pray that these fevers are not a sign of infections and that her bladder heals itself soon.
Tuesday, November 13, 2001 at 09:00 PM (CST)
Emily's cell count is up to 1.1 today. Her platelets are still really low and she has been bleeding a lot lately from her bladder. It is bright red blood and looks scary. The doctors don't seem too concerned by this. I insisted this evening that she get a platelet transfusion NOW instead of waiting until it plummets again in the morning. I hope she recovers from the virus soon and that she can urinate on her own. It would help greatly.
Emily is experiencing some pain this evening. She said her bottom really hurts. Benedryl and tylenol did nothing so we resorted to morphine. Even with all these drugs, she is still wide awake and miserable. I hope this won't be a bad night for her.
Monday, November 12, 2001 at 07:37 PM (CST)
Emily's white cell count is at 1.0! The doctors are going to do a blood test tomorrow to see if the donor cells are growing (as opposed to her own cells- bad). They skipped the bone marrow aspiration today because her white count was high enough. The results from the blood test will be back in one week.
Emily's spirits are not much better. The doctors wanted to put her on anti-depressants; apparently, there are several children that are on the drug. We are not too excited about this idea. I am going to keep trying the natural method of raising her spirits.
Saturday, November 10, 2001 at 07:12 PM (CST)
I forgot to add to the last entry that I decided tonight that I will try to make her laugh or smile at least once a day. She is so depressed. It breaks my heart to see it. I told her a story about Jack today and she smiled. I was thrilled.
Saturday, November 10, 2001 at 06:43 PM (CST)
Last night was like the night before. I am getting so tired. I lost my temper with Emily last night and could have strangled myself. She didn't even say anything. She just looked at me. I felt like the biggest loser that ever lived.
Her white cell count is at .7 today! She is covered all over with a rash and we are hoping that it is the engraftment rash that we have heard about. We will have a better idea on Monday when they perform the bone marrow aspiration. We won't get the results until Thursday.
Life is hard enough but it gets harder when some of the other parents keep telling me how bad Emily looks and how they feel so sorry for her. I know that they mean well but there are times when it is hard to hear it. I am glad that their kids are just cruising along without pain and complications. Unfortunately, it really does not help for me to see the incredible difference in courses that my child has taken compared to theirs. Forgive me for sounding weak. I am trying to stay positive but it is so hard sometimes.
The worrying never ends. Once her white cells really start to grow, we will know if she has contracted the CMV virus from Jack. (I pray that she did not.) I am also worried about graft vs. host disease. A little bit of it is good because we would also get the graft vs. leukemia effect. Too much of it is fatal. Her blood pressure continues to rise and her heart beat is at 174 beats a minute tonight. SHe also experienced the temp fluctuation again.
We moved today. Let's hope that this is that last move until we come home.
Friday, November 09, 2001 at 05:11 PM (CST)
Last night was hard. Emily experienced another temperature drop. Then she was having difficulty breathing. Then her blood pressure shot up and so did her heartbeat. Then she spiked a high fever.
Her white count is now .4!
Thursday, November 08, 2001 at 11:44 AM (CST)
Emily's cell count went up to .3 today! It is good news. It shows that the cells are trying to grow.
We slept well last night and she did not experience a rough temperature drop yesterday. Last night, we took a walk and then her nurse and I raced up and down the halls while we pushed Emily in a chair. She liked the speed. :)
Dr. Kurtzberg stopped by yesterday after the doctors met for their weekly meeting. She is so kind and honest. She never rushes me when I ask her questions and she is always interested in engaging Emily in a conversation. I always feel better after talking to her.
I was so frustrated and angry yesterday. (I would have loved to put on a pair of running shoes and go out for a run.) After my early morning journal entry, I ran into Emily's nurse and she tried to give me some peace. Then later than morning, I talked to one of the mothers on the unit and she helped tremendously. She almost always finds a way to make me laugh or see something amusing in this difficult situation. Thank God for the little things and for the way He sends me help when I am at my lowest (a call from a co-worker yesterday, the mom I mentioned earlier, people I have met from the Notre Dame club in NC, the FANTASTIC nurses that Emily has had recently . . .).
Something interesting happened two nights ago when Emily had to have a catheter inserted again. It was awful the last time we tried this and even the urologist was getting concerned because it was so difficult to insert it. Emily's nurse started the process and just before she began, she said a little prayer!! I was pleasantly surprised. You don't see that very often in a hospital. Believe it or not, she got the catheter in on the first try!
Wednesday, November 07, 2001 at 07:16 PM (CST)
I will continue to hope for Emily's recovery. She is having a better day today.
Wednesday, November 07, 2001 at 05:42 AM (CST)
I just found out that her cell level count dropped back down and cannot go back to sleep. I feel so discouraged and angry and completely sick with frustration right now. Aughhh!
Tuesday, November 06, 2001 at 10:10 PM (CST)
Emily's cells took a baby step forward today!!!!! THANK YOU GOD! I am trying not to get too excited. Every day is different but at least we had some good news today. We had a really rough morning and she was pretty sick, but she got better this afternoon and took a walk again. We live for those few minutes of "progress."
I am ashamed to say that I could not muster much of a prayer yesterday. I was so angry and frustrated. I wanted to yell at someone or pick a fight with anyone just to release the anger. A good friend of mine did something wonderful for me and I realize that all of you are doing it too in your own ways -- she said that when I could not find it in myself to pray, she would pray for me. Thank you all for your prayers and support.
We are getting ready for our move on Saturday.
Jack update: he hates peas. Boy was he mad when I tried to feed it to him. He wouldn't even consider swallowing the food. He definitely prefers carrots and squash. He is also getting very good at rolling. He rolls everywhere now. He is also right on the verge of crawling. He looks so funny teetering back and forth on his hands and knees.
Monday, November 05, 2001 at 10:03 PM (CST)
Hi. Still no engraftment. I am fighting to stay positive and avoid being bitter and angry. John is much better at this than I am. Emily had her catheter removed today but is still unable to urinate and it looks like they are going to put it in again. That is going to be so painful for her. It hurts me just to think about it.
Everything else is the same with her. No changes.
Sunday, November 04, 2001 at 09:46 PM (CST)
Still no engraftment. Emily continues to experience the body temperature fluctuations. She is also uncomfortable in the bed but nothing that I do seems to make her feel better. She is still not talking very much, except to say that she does not want to walk. (She yelled it at me today; I was delighted to hear it!)
Her sleep cycle is backwards. She is wide awake at night and sleeps most of the day. I try to stay up with her but usually doze off around 2:30.
It is difficult to see all the other children in the unit as they just bounce along down the hallways with no trace of the strain that their bodies are under. I look at Emily and cannot understand why she seems to be the only one who looks and feels so sick. I should not ask, "Why" since it is a waste of energy and time, and no one knows the answer, but sometimes I can't help it. The whole situation is just WRONG and it is so unfair to Emily. How can I expect her to smile? What does she have to smile about?
I hope tomorrow will be a better day for us.
Saturday, November 03, 2001 at 10:32 PM (CST)
Oops- John is still working on the Halloween pictures.
Also, I forgot to mention that we are moving again. Probably this weekend.
Saturday, November 03, 2001 at 10:25 PM (CST)
Still no engraftment . . . It is all I can think about. I wrote Dr. Kurtzberg in a panic. She tried to calm my fears but as wonderful as she is, she also cannot predict the future. :(
Emily was much more alert today during the times when she was awake. John took good care of her while I was with Jack.
Jack has three teeth (all on the bottom) and is on the brink of crawling. He has also figured out what the phone is and whenever I pick it up, he immediately says, "AH!"
Halloween pictures of Emily and Jack can be found in Emily's scrapbook on www.emilykim.8m.com
Thursday, November 01, 2001 at 07:54 PM (CST)
Last night was long. Emily had trouble breathing and I tried to keep her mouth hydrated (she could not breathe out of her nose). Thank God for the wonderful nurse that she had last night. She is always great and so attentive. Emily likes her too. She noticed Emily was breathing rapidly and called for a chest x-ray this morning. Emily also had a viral battery done and she usually fights us and screams during this test but she was so drugged that she didn't even flinch.
Her temperature is dropping again tonight. Looks like another long night.
I am getting worried. It is now 30 days post transplant and she still has not engrafted. I think that the doctors start to worry at day 40. That is only 10 days away and I am starting to feel those good ol' stomach cramps coming back. I woke up with nightmares about it last night. Please pray with me that she engrafts soon.
Wednesday, October 31, 2001 at 11:40 PM (CST)
Today was the same for Emily as yesterday. The test results for the virus in her brain came back today and the results were negative (in other words, she does not have it according to the test). However, the doctors still believe that she has it and are continuing her medications. They have added a new medication with the hope that it will stop her seizures.
The PBMT unit had a party for Halloween. Emily managed to dress up as a fairy princess. She had her face and nails painted. She loved it! I wasn't there because I desperately needed to get home, shower, sleep, eat, and see Jack. (I heard that she looked good.) By the time I got back to the hospital, she was asleep and ready to go down for a CT scan of her chest.
She has been taking late night walks with me to keep her lungs healthy. She gets SO mad at me because she abhors the walks. She keeps saying that she is too tired to walk and that her legs hurt. Sometimes she pretends that she is sleeping. Nothing stops me from getting her up. I just keep telling her that I love her and that I will not let her lungs get sick. I asked her if she was mad at me and she said yes (with a BIG frown). I then asked her if she still loved me and she looked down and nodded yes. She is such a sweetie.
One of my friends from work was kind enough to make prints of two of Emily's paintings. We displayed the prints in her room and she was so proud as the nurses gushed over her art.
Baby Jack was baby Mickey Mouse for Halloween. John said he looked really cute. I didn't get a chance to see it but he took pictures of Jack (and Emily at the hospital) and added them to Emily's other website. (www.emilykim.8m.com)
Tuesday, October 30, 2001 at 11:07 PM (CST)
Emily had a rough day. She started out with terrible itching and discomfort and then her temperature dropped to 94 degrees. It stayed there until mid-afternoon and this time nothing that I did could bring it up. The doctors doubled the dose of one of her medications; unfortunately, it is the medication that makes her loopy. Not great. Then tonight she had difficulty breathing, her eyes were watering and she couldn't speak very well. I got scared and called the attending doctor on the unit. He did not inspire any confidence in me and so I contacted Dr. K and am waiting to hear from her.
Despite all of this, I had a good laugh today with one of the parents whose daughter is also getting a transplant. It was one of those belly laughs where your stomach actually hurts from laughing so hard. That felt so good.
I still pray for her baby cells to grow quickly and to figure out what they need to do. I pray that there won't be any more complications. A parent from Emily's school wrote a poem about her on the guestbook and I printed it off and read it to Emily. She loved it and SMILED! We copied it and put it on her door so that everyone could enjoy it with us. (Thank you Megan for the poem!)
Monday, October 29, 2001 at 09:08 PM (CST)
Well, this is record for me. Three journal entries in one day!
Today was an OK day. She only had one episode of delusions. Thank you God! Her temperature was better (still a fever but not wild fluctuations). She had a tough time with the catheter placement again (a lot of pain for her) but that's over with for now.
The doctor stopped by and I kind of freaked out when he told me that Emily is only the 8th child that they know of (and they have done hundreds of transplants) to experience these complications. Hmmmm, not too reassuring. He said he was concerned but not worried. He also said that he was going to take her off of one of the medications that can suppress engraftment. I pray that she engrafts soon.
On a positive note, I read the guestbook tonight. I cannot believe I had not seen it yet and I was overcome with emotions when I read the entries. Emily is truly BLESSED to have so many wonderful people praying for her and wishing her well. I had no idea. The outpouring of love in the guestbook was truly humbling. With so many well wishes and prayers for Emily, how could I not sleep well tonight? Thank you all. :)
Monday, October 29, 2001 at 11:51 AM (CST)
Here is a poem that someone sent to me and I found helpful. It was written about autism but I could relate as I once had a "perfect" child too. Then came leukemia which has altered our lives and my daughter's life forever. But as the poem says, I still see Rembrandts.
Welcome to Holland
When you're going to have a baby, it's like planning a fabulous
vacation trip - to Italy. You buy a bunch of guide books and make your
wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice.
You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack
your bags and off you go. Several hours later, the plane lands. The
stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for
Italy! I'm supposed to be in Italy. All my life I've dreamed of going to
Italy."
But there's been a change in the flight plan. They've landed in Holland
and there you must stay.
The important thing is that they haven't taken you to a horrible,
disgusting, filthy place, full of pestilence, famine and disease. It's just
a different place.
So you must go out and buy new guide books. And you must learn a whole
new language. And you will meet a whole new group of people you would
never have met.
It's just a different place. It's slower-paced than Italy, less flashy
than Italy. But after you've been there for a while and you catch your
breath, you look around.... and you begin to notice that Holland has
windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and
they're all bragging about what a wonderful time they had there. And for the
rest of your life, you will say "Yes, that's where I was supposed to
go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because
the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to
Italy, you may never be free to enjoy the very special, the very lovely
things ... about Holland.
by
Emily Perl Kingsley
c1987 by Emily Perl Kingsley. All rights reserved
Monday, October 29, 2001 at 05:58 AM (CST)
Emily was more alert yesterday morning and afternoon. She started to exhibit more reactions to the medications towards the evening when her temperature dropped to 94 degrees. We tried for a few hours to bring up her temperature but were not successful so I started heating up blankets in the dryer and placing them on her. That seemed to do the trick. She is still not urinating properly and has to get up in order to drain her urine through the catheter. That is unfortunate but it gives us a good reason to force her out of bed and to walk.
Emily had a very special visit yesterday from her 1st grade teacher at Grace Episcopal. She was drowsy when April stopped by but seemed to know that she was there. :)
John and I also had a visit from a classmate of mine from Notre Dame and his wife. It was great to meet them and also therapeutic for me. I felt very comfortable with them.
Monday, October 29, 2001 at 05:58 AM (CST)
Emily was more alert yesterday morning and afternoon. She started to show exhibit more reactions to the medications towards the evening when her temperature dropped to 94 degrees. We tried for a few hours to bring up her temperature but were not successful so I started heating up blankets in the dryer and placing them on her. That seemed to do the trick. She is still not urinating properly and has to get up in order to drain her urine properly through the catheter. That is unfortunate but it gives us a good reason to force her out of bed and to walk.
Saturday, October 27, 2001 at 08:33 PM (CDT)
Emily's progress has been going up and down. Yesterday she did not know who I was. Today she did. She is still itching and uncomfortable. Her extremities are cold and she is still suffering from cold sweats. Apparently, the part of the brain that regulates body temperature and her memory is affected by the seizures. Thus, she is experiencing these complications.
Last night was particularly hard for me as I watched her shivering then sweating then pulling at her head and muttering something unrecognizable. We have been fighting this battle for over 4 years and it is so hard to watch Emily like this. We are used to seeing her smile, giggle and come up with some witty sayings; not depressed, unable to walk well and suffering from delusions. We are used to seeing her draw happy, beautiful and bright colored pictures; not dark clouds with rain/snow or playgrounds with people that have no faces. I guess I just got tired last night and could not bear to write about it.
We also found out today that what we thought was engraftment is NOT engraftment. In fact, she has not started to engraft yet. We learned that the virus she has in her brain can actually suppress the immune system and interfere with engraftment. Oh my God.
I pray for strength and peace. I pray that Emily's seizures will stop soon and that she will regain her strength; that her new cell hurry and grow; that she gets her spirit back; that there are no more complications.
Thursday, October 25, 2001 at 05:37 PM (CDT)
Emily did not suffer from too many hallucinations today. Her temperature continues to fluctuate between 103 and 99. Now our concern is to control her soaring blood pressure and to figure out why she is experiencing some of the symptoms (cold sweats; feeling cold and then hot and then cold, etc.; coldness in the extremities while perspiring on her head) that she is having. She also got her spinal tap this morning and we should have some results by next Wednesday.
Lisa Carr (a good friend and parent of one of Emily's classmates) has been a godsend. She has been caring for Jack this week while John and I have been at the hospital with Emily. What an incredible help she has been and what a sacrifice her family has made for us. . . Lisa visited Emily today and I was glad that Emily got to see a familiar face. I came back to the hospital later on and talked to Emily. She looked so depressed. She told me that she was sad. I am not sure if it is because she misses home and her friends, because she is so sick, because she is tired of being in the hospital. . . probably a combination of all of the above. I wish I could find a way to make her happy.
She saw Jack again from behind the glass door. Unfortunately, he was not happy to be there. She looked so unhappy as she tried to connect with him. I am sure that she wishes she could be out there with him. It broke my heart. I pray that her spirits will get better soon.
Wednesday, October 24, 2001 at 08:34 PM (CDT)
We had a visit from Dr. Kurtzberg (Emily's primary doctor) about Emily this evening. She is so amazing and I cannot believe how dedicated she is to her patients (and their parents). I have never met a doctor like her and I thank God that He led us to her. She helped calm a lot of my worries (she must know how stressed out I am capable of getting). She said that she is not too worried about the viruses that Emily has and that we are going to start treatment for them immediately. She said that they just mean that Emily may have to be hospitalized longer than expected.
Emily is doing much better tonight. Her short-term memory will need time to recover. The medication should help with this as the memory problems are a result of the seizures. She was not as delusional and she even got up to do some arts and crafts activities!!! I couldn't believe it. Her head dropped to the table a couple of times, she was shaking constantly and she wasn't walking well, but she got up! She is amazing. Even during her worst state of delusions, she kept asking about Jack and who was taking care of him.
John is showing his humorous side, too. Emily has to do breathing exercises so that she does not get pneumonia (due to laying in bed so long), and he keeps telling her that she has not done them. She then complies and does the exercises, not knowing that she just did them a few hours ago. He has actually found a way to take advantage of her memory loss.
Thank you all for your calls, e-mails and, most importantly, prayers. Thank you for staying with us through this time. It helps us tremendously knowing that there are friends out there that are willing Emily to get better and to make it.
"What time I am afraid, I will trust in thee." Psalms 53:7
Wednesday, October 24, 2001 at 12:12 PM (CDT)
We talked to the doctors today and the MRI showed that she has been having seizures in the hypocampus. They believe that this is causing her short-term memory problem. Also, they suspect that she has a virus in her brain. They are going to start her on additional medications to try and stop the seizures. It will take several weeks to find out if she has the virus in the brain but they are going to start her on additional drugs to try and treat it. I wonder how much more drugs her body can take. It cannot be good for her and I am worried about her liver and kidneys in addition to everything else. I started crying when the doctor told us and I was so embarassed. John is still so strong.
She is still shaking uncontrollably. The doctors said that as long as she is on the FK506 (drug), she will have this. This will last for months, but at least it is normal.
Tuesday, October 23, 2001 at 10:10 AM (CDT)
Emily is still delusional and has no short-term memory. The doctors think that she is having seizures that are causing this. We also found out that there is a change in her brain and they have ordered an MRI to determine what is going on there. In addition, she has a virus in her bladder that is causing the bleeding. I pray that she does not have an infection anywhere in her body, particularly her brain. They wanted to do the MRI last night but she could not hold still. They are going to do one today (knock her out) and go from there.
Thank you all for your prayers.
Sunday, October 21, 2001 at 10:11 PM (CDT)
Hello everyone. Emily has been have an extremely difficult couple of days and we do not know when it will end. She has had a reaction to one of her medications (the nerve endings in her body are very irritated) and she is experiencing burning sensations, pain and relentless uncontrollable itching. The pain and itching were so bad that she started thrashing around on the bed, thereby bruising herself terribly (the doctors were shocked by the amount of bruising) and drawing blood from various parts of her body. Unfortunately, there are no medications to alleviate these symptoms and we do not know when they will end. She is now on strong narcotics to help her get through it but it only seems to keep her so sedated that she cannot move around. She is still experiencing the pain, burning and itching. She is also experiencing hallucinations and delusions. She is confusing me with John and is unable to differentiate between cartoon characters and real people (she thinks the cartoon characters are real). She is constantly talking to herself or some imaginary figure and at times uses words that I do not understand. It is one of the most painful and frightening things I have ever witnessed. On top of all this, we do not know if she may also have some kind of infection. Her blood pressure was very high yesterday and her heart rate was consistently over 195 per minute. She is also bleeding from the bladder and they do know if it is from sores in the bladder or an infection.
John, who is always so calm and collected, really looked beside himself. In all our years of marriage, I have never seen him like that and it unnerved me. Emily had been thrashing around on the bed and suffering so much on Friday night that he had to hold her down all night to prevent her from hurting herself. (Neither of them got any sleep) At one point on Saturday, the narcotic started to wear off and she started thrashing again. It took both John and I to hold her down.
The doctors ordered a battery of tests today, including a CT scan and ECG (to check for seizures that she might be having and bleeding in the brain). We will see. . .
A friend sent me this verse from the Bible and it helps me to keep my sanity: What time I am afraid, I will trust in thee. Psalm 56:3
Thursday, October 18, 2001 at 10:19 PM (CDT)
Hi. Today was hard for me personally. I live moment to moment and pray for God's blessings for Emily. We are in a personal war here and know of three children in the last week who have lost the battle and a fourth is having a very hard time. The pain that the parents are suffering tears at my heart. Everytime I talk to John or the doctors, I feel myself brace for impact and my body gets ready to go numb. I don't know how else to describe it. At the beginning, Emily suffered through uncontrollable and unstoppable vomiting and diarrhea for three days. I have never seen her so sick in my life. Then she had fevers of up to 105 and the shakes. Now she is back to vomiting and fevers. She is weak and John struggles to get her out of bed on a daily basis so that she does not get pneumonia. (I wish I could be as emotionally steady as John. Very little seems to shake him- thank goodness.)
I pray to God for strength. I pray that He give Emily the mental, spiritual and physical strength to get through this and to live a healthy, cancerfree and happy life. There are so many things to think and worry about on a daily basis. If it isn't her liver, then it is her lungs. If it isn't her lungs, then it is her fever and the possibility of infections. If it isn't that, then it is about her exposure to Jack and his virus. If it isn't that, then it is the problems with the apartment. The list goes on and on. I suppose I am feeling overwhelmed tonight.
We miss Maryland and Emily really misses her old life. Please forgive the tone of this journal entry. I hope it is not too depressing. I guess I am feeling sadder than usual. The lost battles of the other children are really starting to get to me. I feel like we have been living this forever and feel so terrible for Emily. How could she help but feel rotten and depressed about this? And yet she still finds a way to smile and laugh. She is so amazing. God help us.
I try to find something positive to write with every journal entry so that there is something good to hold onto. So for this entry, I thank God for another day with Emily. I am grateful that she seems to be engrafting and that John has been so helpful with Emily's care. I am grateful for parents who are so loving and who always try to give me peace of mind, and a sister and brother-in-law who never stop caring. Last but definitely not least, I am thankful for all the prayers and support that we have received.
Kathleen
Thursday, October 18, 2001 at 01:43 AM (CDT)
So far, it has been a good night. Emily is sleeping restfully.
As Kathleen mentioned in earlier entries, Emily experiences an adverse reaction called “rigors” when the anti-fungal drug, Amphotericin B, is given intravenously. Emily will shake continuously and complain of being extremely cold until Demerol is administered. Furthermore, her temperature always rises with the progression of rigors.
For the past several nights, it has been a nightly roller coaster ride. As I comfort her symptoms of chills and shakes with heated blankets from a clothes dryer, within minutes, her temperature would shoot past 103 or 104 degrees. As a result, cool wet towels were used to cool her down causing her to shake and shiver again.
Although the doctors and nurses have tried various ways of pre-medicating to prevent the SHAKES , Emily was on too many drugs to control it properly. Now, she is on a third form of Amphotericin B called liposomal Amphotericin B. It has not caused rigors tonight nor last night. She seems to be tolerating it, which I am estatic about.
Because liposomal Amphotericin B is so expensive many hospitals don’t use it (like our previous hospital), but not here. This just re-enforces our decision to transfer down here. I’m really impressed with the staff and the hospital. They are so “kid” focused, and they should be.
john
Wednesday, October 17, 2001 at 11:49 PM (CDT)
Wednesday, October 17, 2001 at 11:48 PM (CDT)
Sunday, October 14, 2001 at 10:11 PM (CDT)
I was well enough to see Emily today. So good to see her again. Her appearance has changed dramatically since I last saw her. Her arms and legs have gotten very thin but her stomach is protroding from the steroids. She threw up three times in the hour that I spent with her. She has apparently been throwing up a lot over the last few days. Also, she was itchy and red all over from a rash and also coughing. I was surprised to see a rash on her hands and feet. The doctors think that it is the beginning of engraftment! THANK YOU GOD!!!! We don't know for certain but that is what they think. I pray now that her new cells grow quickly and that her immune system gains strength QUICKLY. This is so important as we still do not know if she has the CMV virus and the doctors confirmed that there was mold growth in her lungs. I pray that she does not get any infections or complications and that her organs stay strong.
She seemed so scared and uncomfortable while I was with her. I feel awful that I have not been able to help her while I was sick.
Unfortunately, our apartment nightmare has not ended. Tonight I noticed water spots on the ceiling in one of our bedrooms. It turns out that there is water now leaking from the ceiling and the carpet in that room is wet. It looks like we may have to move AGAIN! (third time!)
Jack is doing well. He crawled today. Unfortuately, he was crawling backwards! :)
John will try to take pictures of Emily and add them to the website.
Saturday, October 13, 2001 at 02:39 PM (CDT)
Emily is still fighting a fever. It seems to come and go in 12 hour increments. She is such a trooper. John said that she played soccer in the halls yesterday, too. I went to the hospital yesterday with my mom and Jack and Emily got to see Jack through one of the glass doors. She was so sad that she couldn't touch him and Jack was feeling particularly non-responsive to her at the time. I believe that it was still very good for her to see him. The doctor said that Jack will not be allowed to see Emily for the remainder of her stay as he could give her (or the other children)the cytomegalovirus (if she has not already been infected with it by him).
The doctors told me that Emily is a very tough girl. Unlike the other kids on the unit, she has not had to rely on the morphine pump to relieve her pain. I guess she has just been bearing it. She is definitely Daddy's little girl. :)
Thursday, October 11, 2001 at 07:25 PM (CDT)
Emily has had a fever of 102-103 over the last two days and is unfortunately shaking from the fever. I feel awful for her and I feel terrible that I cannot do anything to make her more comfortable. She sounded so sad when I spoke to her and I pray that it does not mean there is anything serious happening inside her body. On a more positive note, the hospital gives each child a "best buddy" to spend time with them and cheer them up. Emily was absolutely THRILLED to find out that her best buddy is a Duke cheerleader. She met her today and John said that Emily perked up a bit during that time with her.
I pray that Emily engrafts soon and that she does not suffer any complications. I pray that her body (especially her lungs, liver, kidneys and heart) will stay strong and she does not suffer from any viruses or infections.
Wednesday, October 10, 2001 at 10:00 PM (CDT)
Emily has been a real trooper the last few days. She and John have been exercising! This is good news and we are so happy that she is getting out of bed. She called me today and said that they were playing soccer in the halls. :)
Emily started getting mucositis (ulcers in the mouth, throat and esophogous tract) today. The doctors said that it is to be expected. I hope that it will not be too painful for Emily. Thank God for the morphine pump. She also started to get a fever again tonight. I do not think the doctors are worried so I am pretty calm about that too. I pray that neither of these are indicative of or precursers to something more serious.
I am still fighting something and have not been able to see Emily. I talk to her often. My mother (bless her) has been taking care of me and helping me to recover.
Thank you all for your continued prayers and thoughts for Emily.
Monday, October 08, 2001 at 05:03 PM (CDT)
Emily had a fantastic surprise today. Three friends from my office drove down and visited us. Emily really lit up and was happy to see them and I got a glimpse of the old Emily again. I am unfortunately still down with something and John has been staying with Emily. My mom flew in to help me heal. (Moms are great, aren't they?)
We found out that Emily has wheezing in her lungs and she had a chest x-ray today. We will see what the results are. Unfortunately, we also found out that Jack has tested positive for a virus that can cause very serious complications for Emily if she contracted it. I fear that she did as she has seen a lot of Jack. I am panicking over this because if it is active in her then I wonder if it will in fact be more serious for her. I think that one of the hardest things about this process is that we are on a constant emotional roller coaster and I feel like I must completely brace myself for each conversation for fear of another bomb. I wish I could be as calm as John. Thank God the doctors are so understanding here.
Friday, October 05, 2001 at 04:27 PM (CDT)
Emily only threw up once on Wednesday, but has had some pretty busy nights. She wakes up often to go to the bathroom at night and I have not yet mastered the technique of quickly pulling the five extension cords out of the wall and pulling her blood pressure cap and EKG lines from her body and getting her to the bathroom. At 1:00, 3:00, 5:00 and 7:00 in the morning, I start to stumble through it. Wednesday night was such a night and she also woke up at 4:00 with severe shaking from one of her drugs and I stayed up with her while we waited for the drug (to take care of the shaking) to work its way into her system. On top of it all, her IV machines were going off all night long and after three trips to her bed to call the nurse to fix the pump, I was worn out. Unfortunately, I am now sick (I felt my body give out) and cannot be with her. John has taken over and I wish I could be there for her. Now it is my job to get better as fast as possible.
John said that he experienced the same situation last night. I hope he can stay healthy until I am well enough to take over.
I called Emily to talk to her this afternoon and she sounded chipper. I was glad to hear that she was having fun with her daddy. :)
Wednesday, October 03, 2001 at 09:59 PM (CDT)
Emily had a good day today. She did not vomit or have a bad case of diarrhea. She did have a fit this morning when the physical therapist stopped by to get Emily to take a walk. She has not gotten out of bed very much in the last couple of days (because she has been so ill and depressed) and because of the risk of pneumonia, she really needed to start walking around. Let's just say that she AND her LUNGS got a great workout today with all the screaming and yelling. :)
Emily's doctor stopped by today and we just cannot say enough good things about her. She is absolutely WONDERFUL and obviously cares so much about Emily (physically and emotionally). I am so happy that Dr. Kurtzberg is taking care of her.
Thank God and all of you for your prayers. I pray that she will engraft soon and that she does not suffer from any serious complications or infections during the next 100 days.
Tuesday, October 02, 2001 at 09:03 PM (CDT)
Hello everyone! Emily received her transplant today and I was very excited. (John and Jack could not make it to the hospital to witness the event but we took pictures.) She screamed and cried a lot because she was scared and nothing that I said or did seemed to make any difference in comforting her. The procedure was quick and painless but she was still upset. After the transplant, she fell asleep for several hours due to the double dose of benadryl. Now she is WIDE AWAKE and I am ready for sleep. :)
Now we wait and pray that the donor cells grow quickly and that she does not have any complications until that day.
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