Journal History
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Tuesday, October 26, 2004
My dad has asked me to update this site a couple of times because he knows there are people still checking it. So, to those of you who still take a peek, this update is for you. Please know that I think of you often and am so grateful to you all for your support and prayers. Thank you!
Kelsey is just great. We celebrated her 20th birthday this past June. Last spring she received her Associates degree from the Community College of RI. She transferred to Wheelock College up in Boston which is within walking distance of Children's Hospital and the Ronald MacDonald House where we lived for many months.
Never in my wildest dreams could I have imagined that she'd be living up in Boston again. And, she's living up there while the Boston Red Sox are making history! Her dorm is so close to Fenway Park that she can hear the roar of the crowd. We were in Boston visiting Kelsey the day game 4 against the Yankees was played and it was exciting just to be in the city. I would love to be Kelsey right now. She's not a baseball fan and doesn't understand why I'm so excited about baseball.
Kelsey is studying to be a Child Life Specialist. It is a relatively new field that we learned about when Kelsey was sick. A Child Life Specialist is a member of a medical team in a hospital or clinic setting whose focus is the sick child. They are known to the kids as the "Play Lady" because they do arts and crafts, play games with the kids, makes sure there are videos to watch and toys and games to play with. They run support groups, plans field trips, organize week long day camps, get tickets to movies, concerts, and theme parks. They also stay with a child while parents meet with doctors and nurses. Their focus is the child and their job is to help make the child's hospital stay or clinic visit as pleasant a possible. Her goal is to eventually work at The Tomorrow Fund Clinic at Hasbro Children's Hospital in Providence.
In my mind, it's the perfect career choice for Kelsey. She's a creative individual with a unique life experience that she will be able to draw upon to help sick children. It's an occupation that will allow her to give back and that's important to her. She understands how lucky she is to have survived her illness and the transplant.
Spencer is now 18. He graduated from high school last June and is now a CCRI in the Criminal Justice program. He's working as a cashier at a local family owned milk store and working as an assistant karate instructor at the karate school down the street from us. He is passionate about his martial arts training and would eventually like to have his own karate school. He enjoys studying the law and but is still undecided about his career. Teaching self defense at a police academy is a possibility. He's got time to decide and I think CCRI is a good place for him to be right now.
Cooper is 8 years old and in the 3rd grade. He loves school and has the same teacher that Spencer had when he was in 3rd grade. Cooper is a Yankees fan. He is also a karate student and has Spencer as his instructor one night a week.
Walter and I will celebrate our 25th wedding anniversary next month. It's hard to believe. We are going to Bermuda for a 3 day weekend!
Walter is still working at the VA Hospital in the ICU. I'm working as an accountant for a small company in Central Falls and getting ready for another tax season with H&R Block. I also opened a small office to do Reiki treatments this year. My goal with Reiki is to bring it Hasbro Children's Hospital. We learned about it while we were up in Boston and I feel it was an essential park of Kelsey's recovery.
Thanks for checking in. I hope you found this update enjoyable. I've decided to keep this web site going because from time to time I get an email from someone who is dealing with Aplastic Anemia. Kelsey's story gives hope to those who are newly diagnosed. We are so lucky!
Sunday, January 26, 2003
Aloha and Happy New Year 2003!
Many weeks have passed since I last updated this site. I am not even sure if anyone still checks it.
To those of you who do, I apologize for taking so long to check in. I hope you have some how gotten the news that Kelsey is doing very well.
When I look at her now, it is hard to imagine that this is the same kid who spent so many days in a hospital bed. I know I will never forget just how sick she was and how hard it was for her to go through the bone marrow transplant. I know we all lived through the experience with her and I can honestly say I'm not sure of how we did it. I just know we did not do it alone.
The summer of 2002 was the time when we started to begin to feel like a normal family again. We did our best to make up for the previous two summers that were no fun at all.
So many good things happened last summer. I really wish I had taken the time to update this journal to share them with you ....... but I was too busy having fun.
One of the best days was when Kelsey had her port surgically removed. That was a turning point in her recovery. She no longer needed the device implanted in her chest that was used so often to transfuse blood, medication and liquid nutrition. It was her life line.
We recently returned from a wonderful family vacation in Hawaii.
When Kelsey first became sick, she was granted a wish from The Make-A-Wish Foundation of Rhode Island but was never well enough to travel far from home.
This month she started the new year off by taking a dip in Narragansett Bay on January 1st. A week later she was para-sailing over the warm water of Waikiki Beach.
What a difference a year makes! We are so lucky to have a happy ending to our story.
Joan
Wednesday, May 15, 2002
Day +410
Long time, no update, again I apologize.
Things are good and we've been busy. We've also had some downtime on the computer when it took me over a week to install a new hard drive and upgrade the memory.
Kelsey is continuing to do well. Her one year post-transplant day was about as normal a day as I could have wished for. After spending the afternoon shopping, Kelsey finally got a chance to visit my friend Annie's farm. Remember the pony that had everyone confused? Kelsey got to see the pony almost two years after she asked for one during her very first admission in the hospital.
Kelsey's monthly visit to Dana-Farber on April 17th was a great day for us. She was looking great and feeling well and it turned out to be a very social visit to the clinic and to the BMT unit at Children's Hospital. We got to see some of the nurses who cared for Kelsey and they were absolutely thrilled to see her looking so good. Smiles all around. None of them could believe it had been a year already. We also got to see the priest and child life specialist who supported during the long hospital admission. The two of them had run in the Boston Marathon and it was fun to talk with them about their experiences.
Easter was a bit of an emotional time for me. I could not help but compare the suffering of Jesus on the cross and the resurrection to what Kelsey has been through with the transplant. She certainly has suffered a great deal of pain, often in silence, and there were times where I was afraid she would not survive. If I look at where she is today and think about where she was a year ago, I can only think that it is an absolute miracle. I don't think I will ever get through another Springtime and Easter season without thinking of how lucky we are to have Kelsey with us. Bone marrow transplant is like the Winter where plant life appears to be dead and the recovery from the process is like the Spring where everything is beautiful and in bloom. Kelsey is like the plant and flowers that have come back to life and are blossoming.
Right now I should be packing my bags because Spencer and I are off to Cleveland, Ohio at 6:00 am tomorrow morning. He's in the high school band and I'm a chaperone.
My dad is doing well and back to his normal self (with a few changes in diet and activity). He's following the doctor’s orders and you'd never know he had a heart attack if you saw him.
Kelsey is off her IV nutrition and is maintaining her weight. We'd like to see her gain some weight but as we say in Weight Watchers (which I haven't been to in 2 years but that's another story) staying the same is good.
She's off Prednisone and weaning off the FK506. We are watching for signs of Graft vs Host Disease (GvHD) and so far have seen nothing! That's reason for celebration. Her blood counts continue to be good. She no longer needs Procrit to boost her red cells into the normal range and her white count is doing fine. Her platelets are not quite in the normal range but she's not brusing or bleeding so we're happy that she's making enough on her own. Whenever I get worried about her platelet count I have to remind myself that she has not needed a platelet transfusion since August 18, 2001. That's fantastic considering she needed platelets transfused twice a week before the transplant.
Speaking of transfusions, I will forever be thankful to the RI Blood Center and all the volunteer donors who helped keep Kelsey alive when she was unable to make her own blood cells. So, that being said, please mark June 23rd on your calendars. We are having a blood drive in honor of Kelsey at our church, St. Maria Goretti's, on Power Road in Pawtucket. The blood center usually sees a drop in donations in the summer months so we are trying to help them out by sharing Kelsey's story and publicizing the importance of blood donors.
Another date to mark on the calendar is May 27th. Memorial Day! This year we are going to really celebrate. Last year Kelsey and I were in the hospital but this year we plan to make up for the last two years of not so normal holidays. So, if you can, please join us for our annual Parade and Cookout on that day. I will try to get my invitation out a week before but just incase I don't, consider yourself invited! Kelsey told me that her list of people to invite is probably longer than my list. She can invite the entire senior class as far as I'm concerned! The more the merrier!
Other dates we are looking forward to are May 31st, Kelsey's senior prom and Cooper's Kindergarten Celebration. June 7th graduate and Spencer will be playing in the band at the ceremony.
Life seems to be getting back to normal here and we could not be happier about that!
Thursday, March 21, 2002
Day +356
So sorry for taking this long to update Kelsey's web site. So much has happened since the last update.
In brief, January started out to be a great month and we were looking forward to a wonderful new year. Things were going well and the highlight of the month occurred on the 24th when Kelsey swam in her first event since the transplant. She looked wonderful and brought many people to tears and to their feet when she finished in 3rd place and earned a point for her team.
I can't even begin to describe the feelings that ran through me as I watched her swim. It was not something I ever expected to see her do again. I was so surprised by the tears that I was unable to control. I've had two years of practice and have become very good at holding back my tears. In fact, I was proud of the way I had learned how to hold back tear when I talked with people about Kelsey and how she was doing. I'm always afraid to let people see me cry because I think they will get upset and cry too. I've gotten very good at putting on a good face to hide how I'm really doing. In my mind, there's no reason to worry anyone when there is nothing they can do to make the situation better. So, on the day of the swim, when the tears seemed to come from nowhere and could not be control, I was surprised. It wasn't until afterwards when someone pointed out that these were tears of joy and that is was OK to let them go. That's when I understood. The tears I had become so good at holding back were tears of sadness. There were different and the 24th of January 2002 is a day I will never forget.
Well, that review of January was not so brief after all. Let's see how I do with February........
February 4, 2000 was when we learned Kelsey had Aplastic Anemia.
February 2001 was when we decided to go forward with the bone marrow transplant as our only option left to try to save her life.
Can you see why February is not our favorite month? We headed into February 2002 with lots of bad memories coming to the surface and a bit of apprehension about whether or not we'd make it though the month without anything back happening. It was not a very good month. Kelsey was sick for most of the month with a bad cough, sore throat, sinusitis, bad belly pain from pancreatitus, flu like symptoms that resulted in a two-day admission to Hasbro on the 28th. We attended the wake of Zachary, a four-year-old child we’ve known for two years, who died from cancer. She couldn’t swim because she felt so sick and couldn’t breathe through her stuffy nose. Very little schoolwork got done because she spent so much time on the resting on the cough or in bed. What little hearing she has left was gone for about two week because of the congestion in her head. And, by the end of February, grown anxious because I had watched her red cell counts trend downward for 6 straight weeks. On the bright side, Kelsey managed to get through her driving lessons and get her driver’s license on Valentine’s Day. A little bit of normal teenage stuff is a good thing!
Now we come to March, she’s off her antibiotics, had a chiropractic treatments that made her feel wonderful, started physical therapy and started on Procrit injections twice a week. Her red cell counts are normal, she’s physically feeling better, has been getting her school work done, gone out to a movie with friends (she drove) and applied to CCRI for September admission.
While things have been getting better for Kelsey in March, it has not been a good month for my Dad. His sister Bessie died after a long illness. She was buried on March 11th and a week later, on the 18th, my Dad was admitted to RI Hospital because he had a heart attack. He had a 100% blockage in one of the arteries to his heart and needed a stint in to open the blockage. He spent 3 days in the Coronary Care Unit and was moved to the step down unit yesterday. He’s doing better and if all goes well, he may get discharge by the end of the week. He will need to take it easy for a couple of months and will need to make some lifestyle changes but the prognosis seems good. We’re just thankful that he wasn’t on his way to Florida when it happened and that he got to the hospital when he did. Please keep my dad, my mom, Bessie and Zachary in your prayers.
I hope my next update will be filled with good news! Spring is here!
Day +365 is March 30th and Kelsey is ready to celebrate her one year post transplant anniversary!
Tuesday, January 08, 2002
Day +284
Happy New Year to Everyone! Hope you all enjoyed the holiday season!
I think 2002 is going to be a much year for us than the past two have been. Kelsey continues to improve and we are all trying to get back to a more normal way of life. We still have a busy schedule each week with 2-3 medical appointments, trips to the pharmacy, tutoring, home care nursing visits, medical supply deliveries and TPN hook ups. When Kelsey was a baby, I used to pack a diaper back before going out with her. Now I need to pack a medical bag! At least now she can help with the packing.
Boston still only needs to see her once a month. We were there on Jan 4th and don’t have to go back until Feb 6th. That’s nice! Kelsey’s blood counts continue to improve (see old web site for the numbers). White cells have been good for a while and her platelets are now in the normal range! She has not had a red cell transfusion since Nov 16th. That’s’ a new record and it looks like she may actually be making enough of her own now. She is still getting her daily nutritional needs met with the IV infusion and that require her to have her port accessed all the time (except while swimming). I don’t know how much longer that will go on but I’m hoping she will soon be able to get weaned off of that. I look forward to the day we schedule surgery to have her port removed. That will be when I finally begin to feel like we’ve reached the end of treatment.
This week we go to the registry of motor vehicles to get her another driving permit. She’s ready to get back behind the wheel, that’s a good sign! Another good sign is she’s been baking a lot more. I know Kelsey is feeling better when she feels like cooking. Maybe she will soon start eating some of the goodies she cooks!
Take care!
Wednesday, December 12, 2001
Day +257
We made an 11:30 PM trip to the emergency room at Hasbro just 2 days after my last web site update. Kelsey wasn’t feeling well for most of the day and by the end of the day had a low grade fever. It was the first time a trip to the ER did not result in an admission. She got a dose of IV antibiotics and came home. Not a big deal compared to some of the visits we’ve had in the past.
She still has her ups and downs, a couple of good days followed by some not so good days. Overall, things are slowly getting better. She now weighs 99 lbs and has had 3 consecutive triple digit platelet counts. Go to her old web site if you want to see her counts, there’s a link at the bottom of this page.
On Monday of this week, Kelsey attended a home swim meet. She didn’t swim or suit up. For about 2 and a half hours, she sat at a table, kept score, announced the swimmers in each lane before the events and reported the results and times after the events. She said was really tired when she got home and went to bed fairly early. The day after she was kind of pokey but today she was better. She went to swim practice and was able to do 7 laps with one attempted flip turn.
Tomorrow she goes into Hasbro for an infusion of IVIG (immune globulin) that will hopefully give her the boost she needs to start feeling better. She may also start getting shots of Epogen (Procrit) to help boost her red cell production. Her red cell count is beginning to drop and we know her Erythropoietin level was low when it was checked back in October.
I’ll keep you posted! I like being able to share good news!
PS - I can't remember if I mentioned that Kelsey recently finished her last grade 11 class with her tutor and is now officially a senior. She still has a lot of work to do before June but if things keep going the way they have been, it should not be a problem.
Wednesday, December 05, 2001 at 10:24 AM (CST)
Day +250
Yesterday was a great day! We went to Boston for Kelsey’s monthly appointment.
She gained some weight. Her blood counts are good, actually great for Kelsey. She hit an all time record high with a platelet count of 137! She seems to be holding on to the red cells she got transfused on November 16th and some of the post-transplant discharge restrictions have been lifted!
The best part of the visit was the look on Kelsey’s face when the doctor told her she could go swimming. That was probably the best news Kelsey has gotten in a long time. She went to the pool last week to check in with her coach and being there made her want to jump in the pool in the worst way. Her port has to be de-accessed and she’s not allowed to use the showers but she can swim with the high school team and the season is just starting. Her swim coach is great! He set up a program with goals for her to work towards without over doing it and getting discouraged or frustrated. He knows her well and knows what she’s been through.
Today she went to practice for the first time since last season ended. She did two laps. She looked great as she gracefully glided through the water. She said it was easier than she expected and if we didn’t have to rush off to get home for a tutoring session I think she would have had no problem completing the first phase of her program.
Some of the other things she can do with caution:
Attend movies (a weekday matinee of a film that’s been out a while)
Go shopping (when it’s not crowded, the Wrentham Outlets will be a good place)
Visit and do things with her friends (something she has been doing already)
We still have a few things we have to be careful with. No fires in the fireplace. That’s not an issue with this unseasonably warm weather we’ve been having. No plants or real Christmas trees indoors. Even the artificial tree and ornaments that have been stored in the basement for a year are questionable because of dust, mold and fungus. That’s OK with me. The one we have is really old. I was thinking of buying one of those pre-lit trees after the holidays but now I think I have a good reason to get it now. Doctor’s orders.
So, all in all, things are getting better. And as Martha Stewart would say, “That’s a good thing.”
Thursday, November 22, 2001
Day +237
Happy Thanksgiving!
We are home. Kelsey was discharged yesterday. She is set up to get IV nutrition at home. It runs from 8:00 PM to 8:00 AM. She needs to gain weight and this should help.
Walter is in the kitchen making pies and the Macy’s parade is on TV. Feels like a normal Thanksgiving!
Enjoy the day!
Saturday, November 17, 2001
Day +232
Kelsey was admitted to Hasbro on Thursday after a nice long stretch of time at home. We had gotten to the point where Boston only needed to see her once a month and we had transitioned most of her care back to Providence.
Things had been going pretty well up until November 6th. She went from being a little more tired than usual to a sore throat; bad belly pain, body aches and eventually a low-grade temperature. By Thursday, November 15th, it was obvious that she wasn’t getting any better at home and a trip to the clinic resulted in an admission. We hope it will be a short admission. We know she’ll be in through Monday. The plan is to have her follow a clear fluid diet and get IV nutrition to give her digestive system a rest. She also needed a transfusion of two units of red cells. Lots of tests have been ordered to cover all the bases and she’s getting a couple of days of IV antibiotics. I was concerned that the GvHD of her digestive tract was coming back because we have been tapering her steroids but so far, it looks like she had a viral infection that she just wasn’t able to shake herself.
The day Kelsey was admitted was a tough one. As much as we all know it’s where she needs to be, it’s hard to have her back in the hospital. We are all ready for this to be over. Seeing her get sick and having her admitted to the hospital was extremely difficult. It was especially hard for Kelsey. We both had a good cry.
Yesterday was a better day. Hopefully today will be even better!
Saturday, October 27, 2001
Day +211
Kelsey continues to make improvements daily. Our suitcases are finally unpacked and put away. The taxes are done. We are slowly adjusting to being home and are catching up on doing all the things around the house that were neglected for so long. It feels good to be home and not have the possibility of a hospital admission looming in the background. Being together as a family with all of us living under the same roof is such a joy. There are things we’d like to do and places we’d like to go but for now, we are just enjoying this beautiful time of the year at home.
I don’t think I ever gave you the details of when Kelsey seemed to turn the corner and begin to improve. When she was discharged from the hospital on September 8th, she still had a lot of pain and discomfort. There was no medical reason to keep her in the hospital. Her recovery depended on her being able to eat, drink, exercise and take her medications. None of this was easy for her to do but it was now up to her to just do it. She had gotten past the two months of complications and the experience had taken a toll on her body. She was very weak, tired and barely able to walk. She lost a good amount of weight during this time. It was tough to watch her struggle with the simplest of activities. What she needed to do now was to eat, drink and exercise to build her body back up. It was so hard and at times, I was worried that she was ready to give up. She was tired, not just physically, but mentally. She had done such a good job of staying strong and keeping it together during the most difficult times. Now that we were getting closer to the end, it seemed like she just didn’t have enough energy left to get there. All of us around her tried to encourage her to keep going but it seemed like nothing we did was helping. It was frustrating and sad. Again, we felt helpless. She continued to lose weight. She seemed either unable or unwilling to do the things we all knew that only she could do to help herself begin to heal. It was a tough time. I was at my wits end and kept telling her doctors what was going on at home. We needed help and we needed it soon. She seemed to be wasting away right before our eyes. Then, on September 14th, one of her doctors said the right thing at the right time and the Kelsey who walked out of the office was a very different Kelsey than the one who had walked in an hour before. The transformation was dramatic. Kelsey was determined to no longer let the illness control her. She had been letting it control ever aspect of her day and she just made up her mind that it was now time for her to be in control. She started talking and I think she talked for an entire week, like she was making up for lost time. It was wonderful. It was like I had my girl back. We say she turned the corner on September 14th but it’s really more like she made a U-turn or a hairpin turn on a long and winding road.
When people ask me how Kelsey is doing, I am now able to say she’s good. Not everyday is a good one for her but even if it’s not a good day, it’s never as bad as it has been.
Saturday, October 13, 2001
Day +197
We're good, actually great!
All of us!
I know it's been much too long since the last update and I promise to fill you in on what the last month has been like just as soon as I mail my tax return for the year 2000!
My deadline is October 15th..........
Wednesday, September 19, 2001
Day +173
Ready for some good new? I thought so.
We’re still home!
Today is our eleventh consecutive day with no hospital admissions! We’re closing in our pervious record of sixteen days at home that was set back in July. It feels funny and I have not completely unpacked my suitcase yet but I’m starting think about unpacking it. That’s progress. Actually, I’ve set a goal. I need 10 clinic visits with no admissions before I’ll be able or mentally prepared to unpack my suitcase and put it in the basement. I’m not superstitious, just cautious.
Kelsey has not needed a blood transfusion a month! I believe that’s a new record! Her latest counts are: Wbc 8.92, Hgb 9.5, Hct 26.2, Plt 73, Anc 7320
I’m hoping to see an increase in her Hgb & Hct at tomorrow’s clinic visit in Boston.
Kelsey is nowhere near the point of feeling good. I think that’s just going to take time. Everyday we concentrate on her eating, drinking, and exercising as part of her recovery process. She needs to intake 2-3 liters of fluid a day to keep her body well hydrated and to not stress her kidneys as they process all her medications. With the GvHD (graft vs. host disease) that has affected her digestive system, it’s not easy for her to get in that much fluid on her own. To help her out a bit (and to help keep her out of the hospital), she’s been getting a liter of normal saline infused at home. Her port stays accessed and we have an IV pump at home. Eventually she will be able to drink as much as she needs to but for now, this is helping.
In the past week I’ve been thinking a lot about the plane crashes that occurred in our country on September 11th. It’s hard not to think about what happened to our nation on that day. What I find myself doing is drawing parallels to February 4, 2000. That’s the day we learned Kelsey had a serious medical problem. Life for us had profoundly changed. Forever. We had no warning. Nothing would ever be the same. We woke up on February 5th to a new world. From the very beginning we knew we had entered into a fight for her life. First we had to figure out what we were fighting and then we had to figure out how we were going to fight. Can you see the similarities between February 4, 2000 and September 11, 2001? If you can, then let me take the comparison a step further.
Since Kelsey was diaognosed, we found our inner strength was much stronger than we ever imagined. Our family, friends, neighbors, medical professionals and total strangers came forward and provided much needed support. New friendships formed with families going through a similar experience. Volunteer blood donors came forward, some for the very first time. People found a way to help.
Something good will come from profound, life-altering experiences, no matter how bad they are. We’ll get through this.
Wednesday, September 12, 2001
Day +166
We’re home again after a two week and one day admission. It sure felt like three weeks!
Kelsey was discharged late Saturday afternoon. We got home around 5:30 PM. It felt so good to be home. There’s nothing like sleeping in your own bed.
Sunday was a beautiful and relaxing day. We just took it easy and enjoyed sitting outside.
We went to clinic on Monday and plan to go back to Boston this Thursday. Her blood counts continue to be good. We’re thankful for that! She still has trouble getting in the amount of fluids she needs everyday and she has no appetite but she’s trying her best to get back on track.
Day +165
God bless America and all the people who lost their lives today. Pray for peace.
Monday, September 03, 2001
Day +157
We’re still in Boston. Kelsey and I are ending the summer the same way we started it. We were in the hospital for the Memorial Day weekend and here we are for the Labor Day weekend. We are actually in the same room. We’re back in the penthouse room on six West.
This admission started on August 24th because Kelsey’s liver function tests were elevated. No hospital admission is easy but this one seemed to be more difficult for me to handle than the others. The timing of it was tough because we had just come off a 29-day admission and were only home for a week. Being the first week of school made it tough too. It’s hard to be in the hospital when “back to school” advertisements are on television. Kelsey would really like to be starting her senior year in high school. But, we’re here and this is where Kelsey needs to be right now.
On the good news side, Kelsey’s liver function tests have slowly been coming down and the doctors decided they did not need to do a liver biopsy. Her blood counts have been holding steady and she has not needed any blood transfusions. Her last red cell transfusion was August 16th and her last platelet transfusion was August 18th.
She’s making progress. It’s slow progress but at least she’s headed in the right direction.
Friday, August 24, 2001
Day +147
You won’t like reading this update but I have to tell you.
Kelsey was admitted to Boston Children’s Hospital this evening. Something is going on with her liver. Liver Function Tests (LFTs) that were done at Hasbro this afternoon were even higher than the LFT numbers from Tuesday’s clinic visit in Boston.
We really wanted to be home for the weekend. The last place Kelsey (or any of us) wanted to be was back in the hospital. But, we don’t always get our way.
Her LFTs have been outside the normal ranges for a while now. On Thursday she had a greenish tinge to her skin color and the whites of her eyes were yellow. Something just was not right. She didn’t feel well and she didn’t look well. We now have some hard numbers to look at but so far we have no explanation. Maybe viral. May need a liver biopsy.
We’re hoping this will be a short admission but we have to be prepared for anything. Not much will happen in the hospital over the weekend. They will watch her to see if the numbers are trending up or down. If they go up and continue to go up, she’s in the right place if they need to do a liver biopsy quickly.
During the last admission one of the nurses described the post-transplant phase as being like a yo-yo. She said, “We get you out of the hospital and you come back, then you get out again and we pull you back in, then we discharge you again ….... and …… you come back.” Eventually, she said the yo-yo string breaks, you get out and you don’t have to come back. It’s a good analogy. I just wish I could use scissors and cut the string but I know it doesn’t work that way. We just have to go through this.
Another way to look at this phase is to compare it to running a marathon without a map or mile markers. You know you must be getting close to the finish line (because you've been in the race a long time and you are getting tired). But you just don't know how much further you have to go. Or maybe a triathlon is a better comparison?
1st event: Immunosuppressive drug therapy
2nd event: Bone marrow transplant
3rd event: Post transplant bounce-back (yo-yo) admissions
We’re almost done but we are really tired. And, unfortunately, no one can tell us where the finish line is. Every runner is different and they set their own pace.
This week the boys head back to school. Spencer goes to 10th grade and Cooper starts kindergarten. It’s an exciting time. I’ve always liked the month of September because it’s a time for new beginnings and fresh starts. It’s a good time to rejuvenate the mind, body and spirit. Let’s hope Kelsey is able to get home soon so she can walk with Cooper to his new school!
Joan
Tuesday, August 21, 2001
Day +144
We are going to try to get back on a schedule of having Tuesdays be our regular clinic day in Boston. Today will be our first attempt.
Before we left the house, Kelsey told me she was going to SCREAM if they told her she needed to be admitted. I can understand that. Her last 2 admissions were decided on during what we thought were going to be routine clinic visits. Today we even joked about packing our bags and being ready for an admission. We figured if we went prepared to be admitted, we wouldn’t end up needing our bags. Something like reverse psychology for luggage. But, we didn’t have time to pack in the morning. I hit the snooze button on my alarm clock too many times. It’s a good thing the guys came by to cut the lawn when they did because that’s what woke me up and got me moving!
It would have been a short trip to Boston today if all we had to do was the clinic visit. Her blood counts were good, she didn’t need any transfusions, just a few medication changes. She had an MRI at 5:00 PM to evaluate her hearing loss. Next Tuesday she has a hearing test with an audiologist. From there we probably need to get her a hearing aide because the loss appears to be permanent.
Joan
Saturday, August 18, 2001
Day +141
Great news! Kelsey is coming home today after a 29 day stay in the hospital.
We we told that after discharge from transplant it is not unusual to have "bounceback" admissions for fever or infection. The one good thing, they told us, was that the bounceback admissions were never as long as the transplant admission. They were right. I just never expected it to be this long.
Let's hope she is able to stay out of the hospital for a good long time!
Thursday, August 16, 2001
Day +139
I got my wish from yesterday! Kelsey is feeling better today than she’s felt in weeks. Ya Hoo!!!!
She woke up at 7:30 this morning and asked me to order breakfast for her. That’s a first! She didn’t eat a whole lot but at least she felt hungry and got something in her. She took her morning meds, napped while she had red cells transfused, woke up a11:00, had a little lunch, had a Reiki treatment at 2:00 and nodded off to sleep.
She still has pain in her belly and back but rates it at a level of 2 today instead of 6, 7 & 8 as she had been reporting. (scale of 1-10 where 1 = no pain & 10 = really bad pain)
The bone marrow transplant doctors and the infectious disease doctors are confident that the spots on Kelsey were not caused by the chicken pox virus. The second test came back as inconclusive. So, they are going to see if any new spots break out, make some adjustments in her medications and possibly discontinue her IV nutrition tomorrow. Steps in the right direction!
The nurse that is taking care of her today told us her goal is to get Kelsey discharged by the end of the weekend. That sounds good to us! Kelsey is ready to get out of here and never come back. Can’t blame her. We’re even talking about going to an outdoor party on the 24th, making rice krispie treats and oatmeal cookies and being home for Spencer and Cooper’s birthdays
I’ll keep you posted.
Joan
Wednesday, August 15, 2001
Day +138
Just when I think we are making some progress with Kelsey’s treatment, something else seems to crop up.
The biopsies taken during the endoscopy she had last Thursday afternoon revealed GvHD. Treatment with steroids began late Friday.
Her blood pressure has been high throughout this admission. New medications have been added to treat that. On Friday, she had an EKG that revealed an unusual wave pattern that was the result of her electrolytes being off. Rapid infusions of potassium and magnesium and an adjustment to the fluids she’s getting IV took care of that problem.
Walter came to Boston to stay with Kelsey Fri, Sat, Sun & Mon. During that time she was started on IV nutrition, had a couple of rough days and sleepless nights with a good deal of pain in her belly and back.
On Monday, she broke out into a rash that looked a lot like chicken pox. An anti-viral medication has been added. The virus that causes chicken pox is also responsible for shingles. Maybe this is what’s been causing her stomach and back pain.
Walter and I traded places on Tuesday so he could go to work. Kelsey had a good amount of pain that was not completely under control. She slept most of the day. We learned that the test of her rash came back negative for the chicken pox virus. Another test was taken just to be sure. At 10:30 PM she took me by surprise and told me she felt like eating something. That’s a first!
Wednesday she needed platelets transfused. An abdominal ultrasound and blood tests have been ordered in an effort to try to determine what’s causing the pain in her back and abdomen.
I’ll let you know as soon as we know more. I would love to give you some good news soon!
Joan
Wednesday, August 08, 2001
Day +131
In my last update, I mention discussion of Kelsey being discharged either Saturday or Sunday. Well, that didn’t happen. I had written that update on Friday when she seemed to be doing better. Her throat infection was much better and she had been able to take in some nourishment. The problem is, she was not able to keep that nourishment down. Something else is wrong and right now, we don’t know what it is.
She has bad pain in her stomach, chest, back and head. It comes and goes and the worst pain seems to be in her belly and chest. Her blood pressure has been on the high side too (154/107). She’s back on the continuous IV pain medication (Dilaudid) with the PCA button and that has helped make her more comfortable. This is reminiscent of the days during transplant when she had GVHD.
This admission is turning into being a longer one than expected. Over the weekend, it seemed like we were in a holding pattern. No changes or decisions were made to treat her new problems. It felt as if the weekend coverage team was not listening to me and not taking me seriously when I told them that something else is wrong. By Monday afternoon, I was ready to lose it. For 3 days I had sat by Kelsey’s bedside and watched her get worse and worse. If you’re a parent, you know how hard it is to see your child in pain. Add to that the frustration of seeing nothing being done to help her and the feeling of being ignored and maybe you can get an idea of where I was. Fortunately, a social worker came to Kelsey’s room at the same moment I stepped out. I was riled up and was ready to become a squeaky wheel, something I don’t like to do. We went to the family room on the floor, I vented, she listened and within 15 minute 3 doctors joined us to discuss the plans for Kelsey. Finally! A decision had been made to ask for a GI consult and plans were being made to move Kelsey to the transplant unit. I learned of the plan at 5:00 PM on Monday.
The major events on Tuesday were: a 9:00 am exam by GI, 11:00 am abdominal x-ray, 1:30 pm set up of IV pain meds, 4:30 pm room change from the 7th floor hematology/oncology unit to 6th floor bone marrow transplant unit, 6:00 pm increase dose of pain meds, 9:45 pm exam by GI team and decision to do an endoscopy late in the day on Thursday. They will look at her insides to see if she’s got GVHD, an infection or something else. The x-ray that was taken in the morning showed nothing unusual.
The plan for today is to transfuse platelets to get her count up high enough for the endoscopy tomorrow. Progress is being made but it seems painfully slow to me. I know there are other kids in this hospital that are sicker than Kelsey who are being cared for by the same doctors. I try to find comfort in the fact that my child is not sick enough to jump to the top of the list. It helps to be back on the transplant unit with the nurses who know her so well.
This Friday will be 3 weeks since her admission on July 20th. I have no idea of when she might be discharged. I’ve stopped thinking about it in terms of days (maybe tomorrow) and am looking at weeks (maybe by this time next week). The focus is on keeping her comfortable, determining what’s wrong and treating the problem. I hope we have some answers and a treatment plan by Friday but it won’t surprise me if we don’t. I may need to become that squeaky wheel to avoid another going into another holding pattern over the up coming weekend.
If you want to learn more about MRSA, go to this web site:
http://www.cdc.gov/ncidod/hip/aresist/mrsafaq.htm
Friday, August 03, 2001
Day +126
Did Sleeping Beauty have a first name? If so, I think I have a new nickname for Kelsey! She's been asleep for 40 of the past 48 hours. No wonder the nurses love to take care of her!
Her throat problem got a lot worse before it started to get better yesterday. She's still uncomfortable but is now able to drink Instant Breakfast milk shakes and suck on ice chips. Maybe tomorrow I'll get her to try oatmeal or mashed potatoes. The poor kid. Her throat was so bad it hurt to just look at it. I can't even imagine how much it hurt her. I'm sure I've said this before, she is one tough kid.
She's getting an IV anti-biotic called Vancomycin once a day. She's got MRSA for those of you in the medical/laboratory fields. We don't know where she got it.
Today there was discussion of discharging her tomorrow or Sunday. I guess she can sleep and get IV meds at home just as well as she can in the hospital. The big difference between being at home and the hospital is fluid intake. At home, I have to bug her about drinking 2 liters of water a day. Dehydration is something we have to avoid. In the hospital, they can give it to her IV while she sleeps. She will probably need red cells and platelets transfused before she is discharged.
I've been here since Tuesday and was prepared to stay until Monday (Walter's next day off). My neglected paperwork from home now fits into two banker's boxes and I have them in the hospital with me. I'm hunkered down and determined to get a handle on everything and file my 2000 tax return by August 15th (I filed for an extension). I used to be a very organized person. Things started to pile up when Kelsey was diagnosed. Go figure!
Hope to have the cars back in the driveway soon. I know you all worry when you don't see our cars. It's nice to know you're looking after us! Thanks!
Joan
Tuesday, July 31, 2001
Day +123
Kelsey has been in Boston Children’s Hospital since last Thursday (Day +118). We went to clinic that morning for what we thought was a regular clinic visit but she ended up getting admitted.
She has a bad staph infection in her throat. Each day she is either the same or worse than the day before. She is in isolation. So far the infection has resisted 3 different antibiotics. She’s in a great deal of pain and has a continuous IV pain med running and a button to push when she needs more.
Please pray that she gets through this.
Joan
Wednesday, July 25, 2001
Day +117
Kelsey was discharged from Boston Children’s Hospital yesterday. Her fever is gone, blood cultures came back negative, no bacteria in her spinal fluid, nothing showed up on the MRI or the CAT of her head to cause concern. (I think she was worried about and afraid of a brain tumor or something just as bad being discovered).
She feels terrible and we don’t know why other than it must be viral.
She’s down in the dumps and it’s totally understandable. I think she’s frustrated because she hasn’t felt well since July 1st and she feels like nothing can be done for her because nothing been identified as a cause that can be treated. I’m just relieved that they didn’t find any of the problems that I’ve read about that could cause life-threatening complications.
She’s still off the Cyclosporine and taking FK506 (Prograf) instead. Actually, she is now only taking 3 different medications and they are given twice a day. That’s an improvement from the 14 medications she originally came home on. She finished the taper of Prednisone, which eliminates the need for Nystatin and Prilosec. Her blood pressure is lower, probably because she’s off Cyclosporine, so that eliminates (maybe) the need for Procardia and a Clonidine patch. She’s also off Dexedrine because she never noticed a benefit from being on it – increased appetite and energy. (Medication details given because I know Diane will be checking!)
We go to Boston tomorrow to see what’s up. Hopefully her counts!
I’ll keep you posted.
Joan
Sunday, July 22, 2001
Day +114
Well, that will be the last time I start an update with the words “NOTHING MUCH TO REPORT”!
Here’s a recap of last week.
Monday – trip to Hasbro to check counts. Kelsey woke up and saw blood on her sheets near her pillow. She couldn’t figure out where it came from but she was sure she would need a platelet transfusion. Her platelet count was OK, so no transfusion was needed.
Tuesday – scheduled trip to Boston. Kelsey had a Pantamdine treatment up on the 11th floor of the Dana-Farber building in the Respiratory Therapy department. This time her treatment was aerosolized instead of IV. She did great and it took one-half hour instead of two hours. She did however, needed a red cell transfusion. We left the house at 9 AM and returned close to 7PM. Long day! The plan is to check counts on Friday and maybe skip a trip to Boston next week.
Wednesday – I went to the funeral of a little boy who had fought cancer for 4 years. He was only 8 years old.
Thursday – I worked most of the day at the HOPE Center then went to Hasbro for my weekly parent support group. Lately I’ve been feeling overwhelmed and tired. I mentioned that I have this feeling like I’m waiting for the other shoe to drop. I think I spoke too soon.
Friday – Walt took Kelsey in to Hasbro for counts. We were expecting things to be OK. Not so. She needed platelets. Kelsey and I got to clinic around 2:00 PM. On our way in, I could see that Kelsey was not at all steady on her feed. In the house she was bumping into walls and needed to steady herself and grab on to the wall or counter to keep from falling down. She hasn’t been all that steady on her feet since discharge but this unsteadiness very different. I had to hang onto her by her belt loops on the way into clinic from the parking lot to keep her from falling down. She got her platelet transfusion and by 5:15 PM we were being told that we needed to pack our bags and head up to Boston for an admission. Wow! This was not exactly how I had expected the day to go. Boston wanted her admitted because they wanted to evaluate her. They ordered an MRI of her head and an LP (lumbar puncture). I saw the doctor’s notes in the ER and they were looking for evidence of a mass on her brain or Cyclosporine toxicity. We arrived at the ER in Boston by 8:00 PM. Kelsey moved right to the top of the list because she was a post-BMT patient. Silly me thought she’d be in her room in no time. It took 6 hours in the ER to get blood work, a CAT scan and the LP.
Saturday – we finally got settled in Room 707 at 3:00 AM. The MRI was scheduled for 7:30 AM. Some of you may remember Kelsey’s last experience with the MRI (a.k.a – the Torture Chamber). It was not good a good experience, so this time we requested sedation. She did great! She barley remembers the LP and the MRI thanks to a drug called Versed (sp?).
Sunday – I’m at home, the boys are having a great time with the Hoppers and Walt is with Kelsey in Boston. She spiked a temp in the middle of the night and is now on IV antibiotics. The MRI did not show anything unusual or worrisome and they think her unsteadiness on her feet is Cyclosporine toxicity. She been on that drug since the beginning and is being switch another immunosuppressive drug called FK5 (I think).
Everyday I ask for the Strength, the Courage and the Wisdom I will need to get me through another day. Today I read an email from a friend. Maybe you’ve seen this before. It was new to me me
--------------------------------------------
From Rose:
A man found a cocoon of a butterfly. One day a small opening appeared. He sat and watched the butterfly for several hours as it struggled to force its body through that little hole.
Then it seemed to stop making any progress. It appeared as if it had gotten as far as it could, and it could go no further. So the man decided to help the butterfly.
He took a pair of scissors and snipped off the remaining bit of the cocoon. The butterfly then emerged easily. But it had a swollen body and small, shriveled wings.
The man continued to watch the butterfly because he expected that, at any moment, the wings would enlarge and expand to be able to support the body, which would contract in time.
Neither happened!
In fact, the butterfly spent the rest of its life crawling around with a swollen body and shriveled wings. It never was able to fly.
What the man, in his kindness and haste, did not understand was that the restricting cocoon and the struggle required for the butterfly to get through the tiny opening was Mother Nature's way of forcing fluid from the body of the butterfly into its wings so that it would be ready for flight once it achieved its freedom from the cocoon.
Sometimes struggles are exactly what we need in our lives.
If we were allowed to go through our lives without any obstacles, it would cripple us.
We would not be as strong as what we could have been. We could never fly!
I asked for Strength......... And I am given Difficulties to make me strong.
I asked for Wisdom......... And I am given Problems to solve.
I asked for Prosperity......... And I am given a Brain and Brawn to work.
I asked for Courage......... And I am given Danger to overcome.
I asked for Love......... And I am given Troubled people to help.
I asked for Favors......... And I am given Opportunities.
I received nothing I wanted........ And I am given everything I needed!
May your path be bright and full of light everywhere you go. And, I pray to the powers that be your feet will never stumble. May the desires of your heart come true, and may you experience Peace in everything you do. May Goodness, Kindness, and Mercy come your way. And, may you gain Wisdom and grow everyday.
-------------------------------------------
Ah hah! I’ve been asking for all the wrong things! Instead of Strength, Wisdom and Courage ........ I’m going to start asking for Love, Favors and Prosperity! Let’s see what happens!
Love, Joan
Thursday, July 19, 2001
Day +111
Nothing much to report. Things are pretty much the same. We are keeping quiet at home while we wait for Kelsey (and her counts) to recover from the fever she had on July 1st that landed her in the hospital. We are carefully following the discharge orders which tend to limit her activities to staying home, clinic appointments and walking outdoors. Her last platelet transfusion was July 10th and the last red cell transfusion was July 17th. If her counts are OK tomorrow, we may be able to skip a visit to Boston next week and just get her checked in Providence.
She looks wonderful but is still not feeling as good as she looks. It takes time.
Maybe this weekend she'll be feeling well enough to get up to the pool club we belong to. It won't be like it was before she got sick but at least it will be a step towards getting back to a somewhat normal way of life.
Keep cool this weekend. Looks like the heat and humidity will be returning.
Wednesday, July 11, 2001
Day +103
We were in Boston yesterday for a regular visit. As I was reviewing the events of last week with the staff at Dana-Farber I realized that Sunday, July 8th was Day +100.
The big day came and went and we didn’t even acknowledge it. We missed a milestone!
We had been so busy during the July 4th holiday week (Sunday, Monday, Tuesday - inpatient, Thursday - Hasbro clinic for counts, Friday - Hasbro clinic for platelets) that by the time the weekend rolled around we were trying to take it easy at home.
The big day, the day we had been looking forward, a major hurdle in the transplant process passed by without us making a big deal about it. On Day –7 when Kelsey was admitted to Children’s for the conditioning before the transplant, Day +100 seemed like a lifetime away. I'll make her a cake today and we'll celebrate Day +100
She’s home and is doing OK. We don’t know what caused the fever last week but what ever it was (probably a virus) really knocked her counts down. She needed platelets transfused again yesterday and we will be checking her counts again near the end of the week. We’re going to concentrate on getting her back on track with her schoolwork while we wait for her counts to recover. She’s got a lot to do and this summer is going to fly by!
Thursday, July 05, 2001
Day +97
Kelsey was home for an entire week before she started to not feel well. On Friday, June 29, she was just not herself and spent most of the day on the couch. Saturday was pretty much the same and by Sunday she had a headache that just wouldn’t quit. Morphine didn’t touch the pain and when I gave her Tylenol she reminded me I was supposed to take her temperature. That’s when we realized she had a fever. It was 101.1 at home and had gotten up to 103.2 in the hospital. With post bone marrow transplant patients, a fever means an automatic admission to the hospital for IV antibiotics. No surprises here. We were told it’s very common to have “bounce-back” admissions post transplant. This was our first one.
She was admitted to Hasbro on Sunday afternoon. Blood was drawn for counts and cultures. The cultures were all negative so we don’t know what caused the fever and all her counts were very low (a virus will knock them down). Her platelets were 18; twelve days ago they were 115. She received 10 units (one bag) of platelets and they went up to 40.
She also needed 2 units of red cells.
The good news is that her blood type has made the switch from O+ to AB+, another indication that the marrow is working! We actually laughed when we heard that the people in lab wanted to type and cross her again because they thought there was a mistake. They’ve crossed and typed her so many times as O+. When she turned up as AB+ they naturally thought there was an error.
By Monday afternoon Kelsey had perked up and was feeling much better. The fever was gone, the transfusions were complete and she was ready for discharge. She was scheduled to be in clinic, in Boston, the next day for her regular Tuesday visit. The plan in Boston was to check her counts, administer Pantamadine (over 2 hours) and Gamma Globulin (another 2 hours) IV. We knew the day in Boston was going to be a long one. Kelsey was given the option of getting discharged Monday so she could go to Boston on Tuesday or staying one more night in Hasbro. She opted to stay in Hasbro and get the Pantamadine and Gamma Globulin administered there instead of in Boston. It turned out to be a very good choice. She’s had Pantamadine before and we know it makes her nauseous. They run it slowly to lessen the reaction. She’s never had Gamma Globulin before so we had no idea of how or if she would react.
It’s a good thing she was in the hospital. We now know she reacts to Gamma Globulin and it’s not good. They started the IV running at 26 ml/per for 30 minutes, bumped it up to 52 ml/hr for 30 minutes and then went up to 208 ml/hr. It was the last rate increase that caused the reaction. Severe lower back pain that quickly went up to her neck and head. Kelsey is one tough kid and rarely complains, even when she’s in pain. With everything she’s been through, I have never seen her in as much pain as I did on Tuesday. I alerted the nurse who immediately stopped the Gamma Globulin and paged the doctor. Kelsey needed something for pain and there was nothing ordered. The next half hour was really scary for me because the pain intensity was so strong and it moved up her spine so quickly. I didn’t know what to expect next and I didn’t like seeing my daughter in so much pain. I rubbed her back and applied ice pack to help with the pain while we waited. I also looked around the room to see if there was a button to push to call a code. I’m sure I don’t have the authority to call a code, but when you spend as much time in a hospital as I have and you see your kid suffering, you really don’t care about the rules.
Kelsey was sound asleep and resting comfortably 45 minutes after the reaction started. It took 75 mg of Demerol IV to manage the pain. A couple of hours later she was sitting up in bed having lunch. She looked great! Amazing!
The Gamma Globulin was restarted later that afternoon. She had reacted to the first bottle and there were 4 more to be administered. This time it went in slower and the fastest rate was 104 ml/hr. No problems. She was discharged late in the evening and we were home by 11:00 PM.
In the hospital, people asked me if we had any plans to go away for the July 4th holiday. I just laughed to myself. I understand that people who are not in my shoes have no idea of what it's like to be in my shoes. I’ve spent enough time away from home. I’ve also had plenty of excitement. I celebrate whenever I get to spend a quite day at home!
Happy Fourth of July!
Friday, June 29, 2001
Day +91
On June 21, 2001, Day +83, we moved out of the Ronald McDonald House and back home to Lincoln!
It feels wonderful to have everyone together again at home. Kelsey looks great and is feeling a little better every day. We will be going to clinic in Boston on Tuesdays.
I’ll write more when time allows……………
Thursday, May 31, 2001
Day +62
I hope you enjoy reading this update as much as I enjoyed writing it.
Big, big, big drum roll please....……............
We have answers..........
We have progress...........
We have record high counts..........
And..............
WE HAVE DISCHAGRE ORDERS!!!!!!!
We have waited a long time for this day to come. The roller coaster ride is not over yet but it sure feels good to get a little closer to the end.
So much has happened during the past week. The endoscopy and biopsies done last Thursday revealed that Kelsey has a mild case of Graft VS Host Disease (GVHD). Cooper’s marrow (immune system) launched an attack against her digestive system. Once the cause of her stomach distress was determined, the doctors immediately began treatment with steroids. GVHD was suspected originally, but all the tests done to indicate GVHD came up negative. Even the biopsies from May 11th. It’s a mild case and may have been brewing for a long time before it showed up. At least that’s what we’ve been told.
It took a couple of days for Kelsey to feel the effects of the treatment and get to the point where she was able to take sips of ginger ale and get out of her room for short walks down the hall.
Early this morning she had a transfusion of red cells. Walter went to CVS yesterday with 14 prescriptions that needed to be filled. He made a couple of trips to the Ronald McDonald House (Kelsey’s new apartment in Brookline – how’s that for a positive spin?) to get things ready for her first night out of the hospital since March 23rd. Tomorrow they go to the Dana-Farber Jimmy Fund Clinic for most of the day. She’ll be back there Monday too. Our understanding now is that for the next few weeks, she will need to spend her days in clinic and nights at Ronald McDonald House.
Now for today’s counts….
Wbc 5.18 Anc 4040
Beautiful numbers!
:-)
Thursday, May 24, 2001
Day +55
Counts since the last update....
Day +49 Wbc 3.10 Anc 2050
Day +50 Wbc 3.17 Anc 2000
Day +51 Wbc 2.25 Anc 1400
Day +52 Wbc 2.00 Anc 990
Day +53 Wbc 2.02 Anc 1010
Day +54 Wbc 2.65 Anc 1990
Day +55 Wbc 2.55 Anc 1580
A little more than half way through the first 100 days but it doesn't look like Kelsey will be getting discharged to the Ronald MacDonald house this week.
Another abdominal ultra sound was done yesterday, another endoscopy today, and a CAT is scan scheduled......all being done to try to determine why she still cannot keep anything down.
All IV meds have been switched to the oral form. IV nutrition was discontinued for a couple of days but will be restarted today because she's loosing weight and getting weaker without it.
I have lots to tell about other stuff but no time.......sorry......
Thursday, May 17, 2001 at 07:52 AM
Day +47
News at 11:00!
This time I'm not fooling around. Really! It's tonight!
Right after the season finale of ER.
Not that I had any control over this, but I couldn't ask for a better time slot! The season finales of all the Thursday night shows on NBC will be aired tonight. Kelsey's story will be on the news the same night as the Friends wedding. That's so cool!
Barbara Morse, the health reporter from Channel 10, was here at my house yesterday for an interview. Joan Milas was here too. She arranged the interview.
So tonight, there REALLY is news at 11:00!
Now for the Kelsey update.......
She moved. On Monday, the powers that be decided to move Kelsey to the room they call "The Penthouse". It's just another room on the transplant unit but it's the nicest room. It's a private room and it’s huge compared to the room she was in. It's a Hepa filtered room instead of a Laminar Flow room and it has a private bathroom. The change of scene will be good for her.
We saw glossy, color photos of Kelsey’s esophagus and stomach and it’s no wonder she’s been having trouble keeping things down. She has some nasty looking ulcerations. An ultrasound was done on Monday and there is no problem with her liver, kidneys and gallbladder. That’s good news. They were checking for any kind of blockage that might explain the unusual amount of vomiting she’s experienced. The blood flow of her organs was good, there was one little spot on her liver they want to look at with a CT but they don’t seem concerned about it. So, now that they’ve seen her inside, they are giving her medicine to help the stomach and esophagus heal.
Her white count continues to climb……
Day +45 Wbc 2.10 Anc 890
Day +46 Wbc 2.70 Anc 1320
Day +47 Wbc 3.25 Anc 1830
Day +48 Wbc 3.13 Anc 1690
……maybe next week I’ll start reporting the platelet and red cell numbers. We haven’t even been paying attention to the number of transfusions she’s needed or the amount of days between transfusions.
Sunday, May 13, 2001 at 08:50 PM (EST)
Day +44
Things are quiet here in Room 608C at Boston Childrens' Hospital. Kelsey's white count continues to increase.
She unoffically broke out of her room on Wednesday, May 9th. That was Day +40. She went to the patient's tub room down the hall and took a shower that soon turned into a bath because she couldn't stand for very long.
Later that day she went for an MRI which was more like a torture chamber. The MRI of her head was ordered to see if they could determine what has caused a hearing loss in one of her ears. Unfortunately, she wasn't able to complete the test. Had I known they were going to tape her head down before they put a cage like device over her face, wrap her arms down by her side with a straight jack like velcro thing and then feed her body into a machine that sounded like a jack hammer was being used....I would have asked them to sedate her. It was tough for me to sit through the test and I was in a rocking chair. The only part of Kelsey I could see was from her knees down. When she started to shake uncontrollably, the MRI ended. I went over to her and asked if there was anything I could get for her. She said, "Get me back to my bed." So much for breakout day!
On Friday she was scoped. She's been unable to keep food or drink down just about since she's been here. At first is was believed to be caused by the mucousitis which was a side effect of the chemo and radiation. But since the mouth sores have healed nicely, she is still unable to keep anything down and now she is getting sick every 2-3 hours. This is very unusual and they wanted to see what her esophagus and stomach looked like. It's not GVHD which is great news! So far she's had no evidence of GVHD anywhere! They are now beginning to think withdrawal of one of her drugs could be the cause (she's also had body shakes) and they are trying other medications to help offset the withdrawal effects.
So, we continue here, taking one day at a time as she rests and continues to heal. The worst part seems to be over. When she arrived on the transplant unit there was a cart just outside her door that held a sealed box of many different kinds of drugs. The kind that are used when they have to call a code to save a person's life. It was a little unsettling when I first the box of drugs. They only served as a reminder that we were checking our daughter into an intensive care unit for a procedure that could either save or end her life. The cart is still just outside her door but the drugs were removed a couple of weeks ago. I never said anything to anyone about the package being gone. I knew it meant that she had made it through the hardest part.
I want to say Happy Mother's Day to all the mothers who read this, especially my own mother. Thanks Mom (and Dad) for all that you do. I don't know how I would have gotten through this without you both being there for us. I know I missed a family gathering for a clam bake today but that's fine with me. Today I got to spend the day with Kelsey knowing the rest of my family was together. What a great gift!
Now for the latest counts.......
Day +39 Wbc 1.25 Anc 460
Day +40 Wbc 1.28 Anc 630
Day +41 Wbc 1.74 Anc 630
Day +42 Wbc 1.67 Anc 990
Day +43 Wbc 2.17 Anc 1150
Day +44 Wbc 2.70 Anc 1113
I never imagined that having my daughter make white blood cells would make me so happy!
:-)
Tuesday, May 08, 2001
Day +39
The numbers just keep getting better and better!
Day +34 Wbc .84 Anc 220
Day +35 Wbc .94 Anc 300
Day +36 Wbc 1.09 Anc 260
Day +37 Wbc 1.25 Anc 410
Day +38 Wbc 1.67 Anc 650 Yahoo!!!! She's over 500!!!!
Day +39 (I'll post them as soon as I get them)
Maybe Wednesday of this week will be her "breakout" day.
I'll keep you posted!
Joan
Wednesday, May 02, 2001
Day +33
Houston, we have ENGRAFTMENT!
Check out these numbers!
Day +28 Wbc .24
Day +29 Wbc .38 Anc 170
Day +30 Wbc .47 Anc 190
Day +31 Wbc .52 Anc 110
Day +32 Wbc .54 Anc 160
Day +33 Wbc .82 Anc 220
The normal range for Wbc is 4.0 - 11.00
Anc needs to be > 500
She's getting there! We really liked today's numbers. Can't wait to see what tomorrow brings.
Kelsey is slowly healing. The mucositis and mouth sores are getting better. She was able to drink an entire can of ginger ale this week. That's a big improvement.
She still has pain but it's not as bad and they have started to taper her IV pain meds. Once she is better able to swallow (and keep down) her medications with no problems, they will start to switch her other IV meds to pill form.
In order to get discharged, she needs to be off all IV meds, be able to drink 2-3 liters of water per/day and eat small meals.
A lot depends on whether or not, and how badly she gets any GVHD (Graft vs Host Disease).
Kelsey's BMT doctor has been watching her progress and looking at her slides (blood smears) and says that Kelsey is engrafting, it's just been a slow engraftment.
I'm hoping it's a case of slow and steady wins the race.
If you have time, check out the web site for the RI Blood Center
www.ribc.org
Oh, one more thing......
I never did tell you what caused all the excitement in our house a couple of weeks ago and from the emails I've gotten, many of you really thought there was going to be "News at 11:00"
....... it was a baby bat.
Next time you see Cooper, ask him what mom did when she saw the baby bat in the house. He does a pretty good imitation of me.
Joan
PS - One of these days, I plan to re-visit Day 0 and tell you in more details why I believe the bone marrow transplant a miracle.
Friday, April 27, 2001
Day +28
We're living by the numbers!
Day +27 .30 Yeah!
Day +26 .09
Day +25 .17
Day +24 .08
Day +23 .16
Day +22 .03
Day +20 .07
The normal range for Wbc is 4.0 - 11.00
Kelsey has away to go but at least she had enough white blood cells yesterday to be able to calculate an Anc.
It was 10!
One question people often ask is, "How long will Kelsey be in the hospital?"
We really don't know that answer.
What we do know is that Kelsey needs to have no fever and an Anc of 500 or greater for 3 consectutive days just to be able to leave her isolation room. She won't be discharged then. She able to leave her room and walk around the transplant unit to the kitchen, family room and play room where they keep the videos and art supplies.
When we get to that point I will find out what the criteria is for her to get discharged to the Ronald McDonald house.
She will need to go to Dana-Farber several times a week to be monitored. They will check her counts and transfuse platelets and red cells as needed.
We've been told it is not unusual for bone marrow transplant patients to need to be re-admitted after they've been discharge because of fever and illness.
No one has a crystal ball and every person who has a bone marrow transplant responds differently to the treatment. There's a normal course of events to follow and then there are always the exceptions.
Kelsey in an exceptional young lady who I hope will have an uneventful and "normal" post transplant recovery.
Joan
PS - I updated the photo album today.
Wednesday, April 25, 2001
Day + 26
The blood drive was held at St. Maria Goretti's Church on Sunday, April 22nd
--------------------------------------------
A message from Dave at the RI Blood Center:
A banner day in support of Kelsey!!
We had 91 people participate and 16 were deferred. If not for the high deferral we could have hit the 85. But 75 is great!! Usually you get a higher deferral with a lot of first time donors.
--------------------------------------------
From Joan:
He's right, it was a wonderful show of support for Kelsey. I was impressed with the number of people who came to donate for the first time. I hope the experience was not too bad and that they will come back again and again and again............
Also, I believe 40 people signed up to be bone marrow donors!
Thank you all for being there!!!!!!
--------------------------------------------
Now for a review of the Wbc....
Day +22 .03
Day +25 .18
.....it goes up and then it goes down. We're looking forward to having it go up or stay the same two days in a row.
Kelsey is now using a little less pain medication and is starting to take sips of ginger ale. The mouth sores are still painful but her cheeks don't look as swollen as they had been. It's now a little easier for her to swallow her pills and she's getting better at keeping them down.
She had a temperature of 102 on Sunday so they drew blood cultures from her port and hickman and started her on antibiotics and antifungal medication. Her temp came down and if the cultures come back negative they will start to discontinue the new meds. She continues to get platelet and red cell transfusions as needed. I've lost count of the total number of transfusions she's had since February 2000, but I imagine it's well over 200 by now.
So far all of this is under the category of what's to be expected....in the beginning the white count goes up and fevers happen...
We consider it to be a good day if nothing unexpected happens. It's an even better day when the white count goes up!
Thursday, April 19, 2001
Day +20
A little drum roll please.......
white blood cell count 0.07
up from several days of 0.02
.... it's a start!
Tuesday, April 17, 2001
Day +18
When you're in the hospital, one day seems to blend in with the next and it is very easy to lose track of what day it is.
There is really nothing new to report today. Kelsey is doing such as good job at getting through this difficult process. We were told that transplant is hard, very hard. But until you go through it, you don't really understand what it means. And for Kelsey's sake and privacy, I can't really tell you how bad it is. Just know that your worst days of having the flu aren't even close to how hard this is for her.
Kelsey sleeps a good part of her days and nights and that's just fine with me. I hope she won't remember much from this part of the post transplant days. When she's awake she's in pain. When she sleeps she is peaceful.
Everything that is happening to cause her discomfort is a normal part of the process. She is still getting IV nutrition and will for a while. When she noticed her hair was beginning to fall out she decided to shave it all off.
Right now we are waiting for signs of marrow engraftment. We were told that "usually" between days 14-21 there is evidence that the marrow has found its way to the inside of bones and has started to grow or engraft. The evidence we are looking for is an increase in her white blood cell could.
Today is Day 18 and her white count was 0.02
No engraftment so far but you can be sure that once it starts, I will update the site more often.
She may take 30 days to show signs of engraftment. So don't get worried if we pass day 21 and I haven't reported an increase in her white count. Everyone is different and they progress at their own pace.
Joan
PS - Dont' forget to check out the other web site. There are updates to the calendar of events.
Monday, April 9, 2001
Day +10
Really no new events today.
Dilaudid drip rate is up to keep her comfy but also makes her drowsy.
Taking pills is still major discomfort because of the mucositic in her throat. Still causes gags on pills once or twice a day.
She is still pretty active. Up to check messages on computer for a few minutes this morning before 10 AM. That's early rising for Kels.
Out of bed to get washed up this evening around 8 PM. Sleeping in naps throughout the day.
Platelet count down to 18, transfused platelets today.
I donated platelets at the Children's Blood Bank today. They almost didn't take me because of the meds that I take.
This has not been a problem at the RI Blood Center. I told them if they couldn't take me that I would check the Dana-Farber Blood Bank across the street. They checked with the supervisor and she said go ahead, take him. It seems that there is friendly competition between the blood banks so they didn't want me to go across the street.
I've been giving Kels back rubs right along, but now she gets head rubs too. Says they feel real good. Then she rubs my head. I have to agree.
She's asleep now, good night.
Walt
Day +8
Yeah!!!! Friends visiting from Lincoln really perked her up in the afternoon.
Kelsey looks very different now. She has no hair and her cheeks and lips are puffy (not to mention extremely painful) because of the mouth sores but she has not lost her spirit of sense of humor.
I wasn't sure how this visit would go because I originally heard a "bus load" of kids were coming up. Thankfully, everyone used common sense in making their own decision to come or not come and it worked out well. Thanks Coach Paul for organizing it! (I think it was good for me to see everyone too)
Joan
Friday, April 06, 2001
Day +7
HEADLINES
Local police officer and pizza delivery guy come to the aid of a Saylesville family.
Quiet evening at home suddenly interrupted by unexpected visitor.
Brave and very pregnant cat protects family.
Mom screams and squats on dinning room table, 14 year runs for cover, 4 year old runs under desk.
Barbecue tongs, not just for hotdogs.
News at 11:00!
:-)
Thursday, April 05, 2001
Day +6
She slept fairly well through the night. Awake a couple of times.
The main issue is pain control without putting her to sleep. She doesn't like to feel groggy all the time but her mouth and throat are very painful. We continue to increase her IV pain medication to relieve her pain and are trying to find a point where she is comfortable but not snowed.
Still retching a couple of times a day usually when she wakes in the morning and once in the afternoon and maybe once in the evening. I wish I could figure out the trigger for this but there doesn't seem to be a specific cause and effect.
Today's counts are - Hct 30, Plts 49, Wbc 0.05
Right where they want her, no transfusions today.
Hair is starting to come out. Not in large clumps but more like shedding.
I went for a run/walk this AM about 7. It helps me feel better. I wish we could take Kel outside, it's a nice sunny day.
Trying home remedies for her sore throat. She says Tylenol cough formula has worked for her at home so the Doc's said we could try it. Also was told that ginger hard candies may help the throat/neasea. Got some herbal cough drops from CVS but no ginger yet. Need to find a store with more variety.
She gets out of bed to wash up and sit in the chair every afternoon/evening. The staff says that's enough activity for now.
That's it for now.
Walt
Tuesday, April 03, 2001
Day +4
Our girl has had a pretty good day. Two episodes of retching this morning and one this evening. She is still getting all her anti-emetics and doesn't bring anything up. The retching irritates her mucocitis and causes her pain. Her Morphine drip is increased to 2 mg/hr with additional 2 mg every 7 minutes if she pushes the button.
She slept most of the day but I was surprised to see her come alive around 3 PM. She did physical therapy, sat up and chatted with Anita, the child life specialist while they made bead bracelets. Got out of bed, did her own sponge bath and washed her hair. Did a little checking of the e-mail while she was sitting up in a chair until her eyelids were to heavy to keep open. Just watching her struggle to stay awake made me sleepy.
And that was our day, nothing spectacular but that's OK. No surprises.
Walter
Monday, April 02, 2001 at 01:12 PM (CDT)
Day +3
There is so much to tell and so little time. For the most part, Kelsey is right on track with what the doctors expect to be happening at this point in time. I say this because I don't want you to be alarmed when I tell you that she is on IV nutrition because she hasn't been able to eat in over a week and is in constant pain and discomfort. She has a morphine drip and a button to push for more if the pain gets worse.
I won't even begin to all list the medications she is on but I will tell you that she has at least 5 IV pumps all going at the same time.
Early this morning she started with a fever and they responded immediately by taking blood cultures from her Hickman and her port and by giving IV antibiotics. I woke up at 4:00 AM this morning to see 5 people in the room around her bed. The fever was found during routine taking of her vital statistics and the doctor was in right away to see her. She's getting great care and attention.
The goal is to keep her as comfortable as possible while we wait to see signs of engraftment. We've been told that usually happens between days 14 - 21 but we won't sweat it if it take until day 30.
Saturday, March 31, 2001 at 06:13 AM
Cooper's bone marrow cells were transfused yesterday. It only took about 45 minutes once they were started at 4:35 PM.
It was a long day and if feels good to have crossed that hurdle. Cooper was great. Kelsey was peaceful for most of the day.
Some people have told me the transplant itself is anticlimactic.
I'd have to disagree.
It is a miracle!
Thursday, March 29, 2001
Day -1
Email update from Walter:
3/27 and 3/28
Couple of tough days for Kelsey.
The chemo and radiation treatments have caught up with her. Chemo infusions are done and she has had 6 of 8 radiation treatments.
Tomorrow she will have her last 2.
7:30 AM and 1:30 PM.
She is sick. Her basic routine is sleep, wake to go to the bathroom, throw up and go back to sleep.
She hasn't had anything to eat since yesterday. Only sips of ginger ale. The staff says not to push her to eat while she is feeling so lousy.
She is supposed to feel better after the radiation is over so maybe by Saturday she'll be doing better.
She was transfused 2 units packed red blood cells on Wednesday.
She got a call from Lindsey today but didn't feel well enough to talk. There's an indicator of how bad she feels because she always talks with Linds.
I am very proud of her, she could be curled up in a ball, sobbing her eyes out, but she is not. She does everything that she needs to do without complaint. Just being in this room 24 hrs/day is tough. It's hard for me and I get to walk around the hospital or go outside a couple of times a day. And I'm not sick!
Wednesday, March 28, 2001
Day -2
Here's the scoop on visitors to the hospital from Walter via email:
The policy is two visitors in the room at a time.
They must feel healthy, no runny noses, no cough, and no recent exposure to someone with an illness. They must have had the chicken pox or the chicken pox vaccine.
Immediate family can visit with a cold if they have to, but must wear a mask.
Right now Kelsey is very tired, but would like to see some of her friends. I don’t know how she will be when visitors arrive the anti nausea drugs make her very sleepy and I'd rather see her sleeping than vomiting.
Let any visitors know that Kelsey may be very tired and not able to see them for long.
I'm sure even a short visit will do her good. It's tough being cooped up in one room most of the day.
Can't have a roomful of kids like she did at Hasbro, but if a group wanted to come up, they could stay in the family room which is right across the hall from her room. Then they could visit her 2 at a time.
Thoughts from Joan:
I think once we get past the transplant and this weekend we'll see how she's doing. It takes 14-21 days after the transplant to see evidence of marrow engraftment. April vacation is coming up soon and that would be a good time for Kelsey's friends to visit during the day.
Tuesday, March 27, 2001
Day -3
Here's an email update from Walter:
"Kelsey is bright and chipper this AM. I slept in her room from 10:30 to 5 AM. No complaints of pain or nausea/vomiting.
We went to radiation this AM @ 7:30. Tolerated well.
She is sitting in bed making a decoration for her door. Doing well.
I'm trying to hook up with child life services to start tutoring ASAP."
That's good news!
But now Cooper is sick. We are still taking one day at a time and I'm sure we will all rest a little easier after Friday is over and the new marrow is in.
Monday, March 26, 2001
Day -4
Walter is in Boston with Kelsey. I'm home with the boys until Thursday night when I bring Cooper up.
Looks like Kelsey is starting to be effected by the drugs.
Here's what Walter wrote in an email to me:
"About 12:45 AM I was called from the family room where I was sleeping by Amy, Kelsey's nurse.
Kelsey wants you. She had her first episode of what I will call an ATG reaction. Generalized joint pain and shivers. Amy had the MSO4 going before I could ask. Kel was asleep within about 20 min.
Before she fell asleep I asked her if she wanted me to sleep in her room. She said yes, so I moved back in.
About 4:30 AM she had her first episode of vomiting. No nausea but vomited a bucketful. Again, Amy had Ativan started IV before I could ask.
Kel also spiked a fever of 102. was given Tylenol. Still hot and uncomfortable this AM.
At 7:15 we went for TBI. Rather uneventful. Lungs shields were placed, and irradiation took about 30 min.
Back in the room, she is wiped out and presently sleeping. Hope she can sleep for a while and wake up and eat something. Kim, day nurse says the radiation wipes you out and makes you nauseous. No need to push food.
Blood cultures were drawn from her lines to see if fever is bacterial or a drug reaction. Temp is down now to 37.7 (99.8)."
All of this is expected, so on the up side, Kelsey is doing what she's supposed to do and the nurses are prepared for it. They are keeping her as comfortable as possible.
Sunday, March 25, 2001
Day -5
Kelsey had another good day. She's getting hit with some heavy duty medications (chemo and ATGAM) and is tolerating them pretty well.
Today we hung out in her room and watched TV while she worked on a latch hook rug project and I knitted a wash cloth.
She's got a VCR in her room and if anyone wants to suggest some good movies to rent, please do in the guest book. Or if you know of a good movie web site that lists past academy award winners that would be fun.
Kelsey is slowly decorating one of the glass walls in her room with construction paper. She has a beach scene started.
I Kelsey a Polaroid one-step 600 camera to keep in her room. She taking pictures of all of her care givers and putting them on the wall. She's also going to take one picture of herself each day as she goes through the transplant. I started her off with film for 80 pictures. That should keep her busy for a little while!
Saturday, March 24, 2001
Day -6
Walter is with Kelsey in the hospital. He called this morning to let me know she had her first dose of chemo last night, a drug called Cytoxan. She did well and will have a second dose tonight.
Saturday, March 24, 2001
Day -6
Walter is with Kelsey in the hospital last night. He called this morning to let me know she had her first dose of chemo last night, a drug called Cytoxan. She did well and will have a second dose tonight. So far so good.
Friday, March 23, 2001
Day -7
She's in her room, her Hickman is in and what a trooper she is. She did great today.
Things went so smoothly this morning it was unbelievable. We got to pre-op right at 6:30. By 7:45 she was prepped for surgery and on her way to the operating room. At 8:45 I was sitting with the surgeon who told me everything went well and that she did fine. I got to see her in the recovery room at 9:15 and by 10:00 she was in her room on the transplant unit.
She was tired and in some pain. The nurses who took care of her got her the pain meds she needed and then let her sleep.
I was so impressed with everyone we met today. They all knew Kelsey's history, talked to us about what was going to happen, made sure we understood everything and were comfortable with the plans, answered all of our questions and repeatedly reminded us to speak up if we needed anything. The attention Kelsey today got from every member of every department was excellant. What I liked most of all is that they talked directly to Kelsey and were attentive to her needs.
By noon she started to wake up, she was feeling better and was hungry.
At Children's they have room service. Kelsey has a menu to pick from and all she has to do is dial FOOD on the phone and place her order. She thought it was great.
I don't know how or why our 2:00 PM surgery got switched to 7:30 AM but I'm glad it did. We ran into a family we know from RI. A young man with Cystic Fibrois who had a heart and lung transplant last December was there with his parents. He's doing well and was there for an outpatient procedure. It was good to sit with his parents in the family waiting area while we waited for our teens were to get out of surgery. Small world.
Thursday, March 22, 2001
Day -8
Remember in the last entry I told you Kelsey was scheduled for surgery at 2:00 PM on Friday? Well, at 4:00 PM on Thursday, while she was getting a platelet transfusion at the Dana-Farber Jimmy Fund Clinic, I followed the directions I had been given and called to confirm her surgery time for Friday.
Will, the nice but busy guy behind the pre-op desk looked it up and told me she was scheduled for 7:30 AM and that she needed to be in pre-op at 6:30 AM! Are you sure?, I asked. He checked again and said, yes, Kelsey Hobbs, 7:30. I said, OK, thanks, we'll be there and hung up.
Arghhhhhhhhhh!!!! OK. Breath, think, and re-group. This is not what we planned on. How are we going to do this? Think, think, think.....
In the meantime, the Boston news is on TV and I'm seeing reports of rivers overflowing, dams being sand bagged, streets flooding, bridges being washed out, basements with floating debris being pumped, traffic tie ups, abandoned cars covered in water up to the steering wheel, .... and I'm wondering what's going on in RI.
Kelsey and I were not prepared to stay in Boston that night but I was seriously considering it since we had to be back so early the next morning and now I'm hearing that snow is expected to start at midnight.
I had to sit there and laugh to myself. Why should this day be any different from the rest? Nothing seems to go as planned and I should be used to this by now.
I had plenty of time to think about what to do because Kelsey's transfusion finished around 5:30 PM then her blood pressure went up to about 148/108. It was too high for the nurses to let her go. She ended up having to take a medication that she had to bite and keep under her tongue. Tasted really bad but it brought her blood pressure down.
We decided to drive home, pack our bags, get the keys to the Ronald McDonald house from Walter who was at work in Providence and head back to Boston that night. We got on our way by 7:00 PM. Now Kelsey is having really bad chest pain (side effect of the med to bring her blood pressure down) and I'm wondering if I should just turn around and bring her to Children's Hospital. She insisted on going home, so we did.
It was 8:00 PM by the time I we got home, the chest pain was gone and I decided to stay home and drive in up in the morning. I still had to go to CVS to fill a new script for Kelsey. I was really tired, a little soggy and it was still raining. Instead of dropping off the script and coming back, I decided to sit, relax and wait the 30 minutes for the script to be filled. But did that happen? Nooooo.....I sat down and watched a lens fall out of my glasses, bounce off my lap and land on the floor. The next 30 minutes flew by as I sat there with blurred vision trying fix my glasses. Maybe tomorrow will be a better day.
Thursday, March 22, 2001 at 05:17 AM (CST)
Today is Day -8
Is also happens to be Day 0 for a friend of Kelsey's who is getting her bone marrow transplant at New England Medical Center in Boston. Please add Shannon and her mom Linda to you prayers.
Yesterday, Kelsey, Cooper and I were in the car at 6:30 AM headed to Boston for a full day of appointments.
7:45 - 11:00
Pre-op appointments for both of them.
11:00 - 11:30
A light lunch in the cafteria
11:30 - 12:45
Radiation consult and consent meeting
12:45 - 1:15
More blood work for both kids at the Jimmy Fund Clinic at Dana-Farber. They took 11 tubes from Cooper this time and even more from Kelsey.
1:15 - 2:45
GYN appointment for Kelsey. Cooper napped in my arms during most of this time.
3:00 - 4:30
Back to Dana-Farber for a consent meeting with Dr. Guinan, the bone marrow transplant doctor.
4:30 - 5:00
Check into the Ronald McDonald house. We have a nice efficiency apartment that sleeps four.
5:00 - 6:45
Drive home in rush hour traffic, not a good idea, but we were all very tired and hungry and Spencer was home alone.
Kelsey and I had something to eat, Cooper fell asleep in the car on the way home and stayed asleep. I had to run out to CVS for a script for Kelsey and go home by 8:15. By 8:30 we were all in bed.
Today we have a lighter schedule.
11:00
Cooper's psychological evaluation for bone marrow donors. I sure hope he passes!
12:45
Kelsey gets x-ray so lung shields can be made to be used during her radiation sessions to protect her lungs.
1:00
Tour of the bone marrow transplant unit, Children's hospital 6 West. As soon as I have a room number for Kelsey, I'll post it in the web site.
After the tour, Walter will head home with Cooper. This is Walter's last day of work for the next 8 weeks. Kelsey and I will go to the Jimmy Fund clinic because she needs a platelet transfusion.
Kelsey will be admitted to Children's Hospital tomorrow. She is scheduled for surgery at 2:00 PM to have her central line placed and will probably need platelets post-op too.
Joan
Tuesday, March 20, 2001 at 04:49 AM (CST)
Day -10
Kelsey was in Hasbro's clinic yesterday for a transfusion of platelets and will be in today for 2 units of red cells.
Tomorrow will be a day in Boston. Both Kelsey and Cooper have early morning pre-op appointments. In the afternoon Kelsey has a radiation consult and a doctor's appointment.
Cooper still needs a donor evaluation and consent meeting with Dr. Guinan and Kelsey need to have a lung shield made to protect her lungs during radation. Thanks goodness Dana-Farber has a Bone Marrow Transplant Coordinator, Monica, who is making all the phone calls and scheduling things for us. I can't imagine having to set up all these appointment myself. I just have to show up with the kids.
Friday, March 16, 2001 at 06:22 PM (CST)
This website was started on March 16, 2001. It is Day -14. The day of the transplant, March 30, 2001 will be Day 0.
This new site will be the place to check as we follow the path that we are on to Day 100 and beyond.
Today, Kelsey got her long hair cut short and became a blonde. She will soon lose her hair from chemo and radiation but today she took control and had fun doing it!
We've been very busy since making the decision to go forward with the transplants. There are so many details to attend to and arrangements to make as well as additional tests and doctor appointments for the kids.
Thanks for being there for us and with us. We know that we are not going through this alone. I hope in the end we will all be able to appreciate the journey and come to understand why we were the ones who needed to take it.
Joan
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