History

Journal History

Tuesday, September 6, 2005 6:58 PM CDT

HAPPY 3 YEAR ANNIVERSARY!!!

Hard to believe it was three years ago today Amy was given her second "birth". We are so blessed to have made it this far.

We had a wonderful summer together. The kids were healthy and happy.

Amy started Highschool today and Dennis started 3rd grade today and is loving it.

On the medical front, Dennis will be going into Childrens Hospital to have his annual bone marrow tests, to see how Fanconi is advancing in his system. We pray that there are no changes. Amy will be going into the hospital in October to have those "spots" taken out and we pray that they are not cancerous.

Thank you all who continue to support us through this lifetime of "worries".

Peace to everyone and Robin (Amy's donor) thank you again for giving our child the gift of life. We will be forever grateful to you.

Friday, July 8, 2005 9:21 AM CDT

Hello everyone.

The Vangel's are doing just fine. School is out and we are happy to be out. We just returned from a great vacation in Vermont. It was nice to have the kids healthy to do some hiking together.

I took the kids into Dana Farber before we left to get the usual tests. Amy continues to plug along, but still having a low IGG level. They will continue to monitor it. Her mouth still has the "spots" and we will deal with that this fall. We will be traveling to Minnesota again for her three year check up too.

Dennis counts continue to drop ever so slowly. We were hoping they wouldn't but knowing the nature of this disease we also knew they would. He will be checked again next month and then in September go in for his annual Bone Marrow tests, which is always a very stressful time for us all.

We hope everyone has a great summer, and thank you for continuing to check in on us.

Monday, April 25, 2005 9:55 AM CDT

Good morning. Ok, I know I said I would update awhile ago. Sorry. Amy's IGG level is yet again in the "low" range and now her Liver Functions are "high". It seems we go along for awhile and then get hit with bad news...She will be going back into Dana Farber this week to have more labs to recheck her IGG level and her Liver. Always something...

Dennis was seen by the Doctor and he continues to plug along. He will be checked again in June and have his yearly Bone Marrow tests done in August.

Amy had a great spring vacation in Florida visiting her Papa Louie with her cousin Charlie. We were nervous about letting her go, knowing that her levels were not right, but we have learned throughout this whole process, that you have to live in the moment, and continue to make great memories.

Thank you all for checking in on us.

Wednesday, March 23, 2005 1:14 PM CST

Hello all.

Amy has been quite sick for the past five days, with a high fever and a cough that sounds terrible. We brought both the kids into Dana Farber on Monday. Amy was seen by her Doctor and her lungs sounded clear. Her blood tests showed that this virus has taken a toll on her counts. Her platlets are back in the "low" level, which of course concerns us, but we are hoping that once this infection is cleared up they will come back up on their own. They are checking her IGG level (immune level) and we should have that result back soon. If it continues to be low, she will be back in the hospital for a day to have a transfusion. We did mention that we are a bit concerned that her immune system is still not where it should be. More tests will be done to see what is going on. Not sure if there is anything they can do about it. The Doctor was too a bit concerend that this is still a problem so far out from transplant... Oh well we go on and keep praying.

Dennis will be seen this Monday by the doctor, there was a mistake in scheduling. His counts are still "ok" is white count is now in the "low" end, which makes him not able to fight infections. I will post an update next week to keep you informed.

Thank you all who continue to check in on us, it really helps us out, especially now when we still continue to have problems.

Tuesday, February 1, 2005 7:59 AM CST

Well, we took Amy into clinic and had two Doctors re-check her mouth. The spots are still there and now they are concerned she might have a "slight" case of Graft Vs. Host Disease on one side, and they are also concerned about the other "spots". They would like to biopsy the spots in the future. We will be discussing this with her Doctors here in Boston and Minnesota.

It would be done in the hospital with a possible stay required. Please keep Amy in your prayers as we enter yet another stage in this Fanconi Anemia battle.

Wednesday, January 19, 2005 6:26 PM CST

Happy New Year!!!

Sorry for not updating in such a long time. Things have been ok here at the Vangels. Amy continues fighting the good fight. I will be bringing her into Dana Farber on the 27th to have her mouth checked again. They are still concerned with the "spots". We are praying they are not cancerous. I promise to update after the appointment.

Dennis has been sick for the past few weeks. I took him to the doctor today, and he checked out ok. I know that each time he has a virus of some sort, that his counts end up going down. Our hope is that they rebound back up on their own. He will be at Dana Farber in March for another set of tests, checking on the progression of the disease.

We hope everyone had a wonderful holiday season and may 2005 be a happy and healthy new year for everyone.

Thursday, November 11, 2004 2 years post-transplant

Return to FUMC in Minneapolis for 2 Year Post-BMT Check-up (new photos!)

Amy and I flew from Boston to Minneapolis, MN for her 2 year post bone marrow transplant follow-up last Wednesday. Beth and Dennis remained at home. The tests were spread out over two days.

For those of you who would like to know, the 2 year post-transplant follow-up includes quite a few diagnostic tests including a Dexar scan (similar to an MRI but it helps to detect bone density), a Bone age x-ray (an x-ray of the wrist), several Pulmonary (breathing/lung) tests, an Echocardiagram (an ultrasound of the heart), an Endocrinology follow-up (growth and hormones), multiple blood tests (Amy had to fill up about 7 test tubes), a bone marrow biopsy (a core or "plug" of the marrow), and aspirate (fluid in the marrow) from the bone marrow biopsy, and a consultation with the Bone Marrow Transplant surgeon to assess how things are going.

After we had finished with the tests on day one, we visited the BMT ward, 4A. There we reconnected with quite a few of the nurses who had helped us so very much 2 years ago. I think they were as happy to see Amy as we were to see them. Unfortunately, because the children are generally so ill on the BMT ward, they see many children struggle unsuccessfully. They said it was very inspiring for them to see a patient like Amy doing so well. They don't get to see the ones who do well often enough. We also got to see Dr. MacMillan and Dr. Wagner up on 4th floor.

While we were on 4A we visited another FA family going through transplant. Amy said hello to a little boy named Clinton, who was at day 11. They talked for along time.

Afterward, we left to go to Mall of America and visit Camp Snoopy. The Mall of America is quite an extraordinary shopping mall. It so big that it has an amusement park with two roller coasters, a log flume ride, and the infamous "Flying Axe" that turns you upside down!

On day 2 we had our consult with Dr. MacMillan in the morning and then went to outpatient surgery for Amy's bone marrow biopsy and aspirate. We left the hospital around 5PM.

On Saturday we slept in and in the afternoon we went back to mall of america to do some shopping and pick up a dozen Krispy Kreme donuts for Clinton and his family, and a dozen Krispy Kreme donuts for the nurses and aides on 4A, and dropped them off.

Sunday morning we boarded a plane back to Boston, sore but happy to have reconnected with some old friends and pleased to have made some new ones, too!

Thursday, September 9, 2004 7:07 AM CDT

Happy 2 Year Anniversary (9/6/02)

Can't believe it has been over two years since we were out in Minnesota beginning our journey. How happy and blessed we are to still be updating on Amy's success!!

Amy had a wonderful summer. It really was the first summer in her life that she has felt GOOD! She spent a week at The Silver Lining Camp in Aspen. She went with about 21 other kids acrosss the United States who have some type of Cancer/illness. What a wonderful time and experience it was for her. She feels a sense of belonging when she attends these camps. She then was off to Hole In The Wall Gang Camp in CT for a week of fun.

We spent a weekend at Camp Sunshine for the annual Fanconi Anemia meeting. The children have a blast, while we sat in on meeting after meeting learning about new routes to take for treatment, as well as listening to the doctors to really be on the look our for cancer in our children.

We had the balloon release which is where we all have white balloons and list the names of children we have lost and release them over Sebago Lake. There are always new families releasing the name of their child and it is heartbreaking to watch. The wishboat ceremony is another tradition. Each child makes a wooden boat with there wish written on it, and then we take them down to the lake with candles lit on each and say our prays. We all know we are saying the exact prayer.."no more deaths".

On the medical front, Amy continues to be doing wonderful. We will be heading to Minnesota sometime in Novemeber for her 2 year check up. She has begun 8th grade and we are hopefull that it will a much easier transition than last year for her.

As far as Dennis goes, he will be going into Childrens for his annual Bone Marrow tests. We have been taking him for his monthly labs and he seems to be loosing his White Count, which is the cell line that helps him fight infection. We hope he can maintain his counts, we really don't want to have to pull him out of school. He loves it so much!

I know this update is long, but it has been awhile since our last update. Have a few prayer requests.... Please say a prayer for a family who has been through two transplants in the last year, and has just found out that the cancer has returned and they will not be able to do another transplant on her. She is only six years old, and also has Fanconi Anemia along with AML. The other request, pray that Dennis' counts improve and that his test results bring us good news. I can't even imagine taking him to transplant now. I know we will someday, but it makes me so worried.

Thanks for checkin in on us.

Monday August 9, 2004 8:03 AM CDT

A busy summer!!

It has been a very busy summer for us. Amy and Dennis have been at Hole in the Wall Gang camp this past week. We'll be picking them up on Wednesday and I'm sure they will have some great stories to share.

Then together on Friday we'll be going to Maine for the annual FA (Fanconi Anemia) Family Meeting at Camp Sunshine for 3 days. There families with Fanconi Anemia can be with other FA families and discuss how they cope with this disease. It is also a forum for a wonderful group of dedicated medical professionals who gather from around the world. They are committed to help our families in our fight to find a cure.

Because of the coordinated efforts of the FA Research Fund, our FA families have the unique opportunity to meet with informed physicians, geneticists, transplant surgeons, oncologists, endocrinologists, and leading edge scientific researchers to learn about the latest scientific advancements in fighting this killer disease and the best treatment options currently available. The FA Family Meeting is also a forum where many bereaved families can come together in a safe and supportive environment to share their grief and pain and reconnect with friends.

Thank you everyone, for continuing to check in on us. And thank you from the bottom of our hearts, those of you who have donated money to the FA Research Fund to advance these life-saving discoveries. We have come so far but still have far to go. Please continue to pray for all the doctors and researchers trying to find a cure for Fanconi Anemia. We sure could use one. And please pray for all of the FA bereaved families who have lost so much and are in such great pain.

Tuesday, March 16, 2004 8:22 PM CST

Hi all!

Life has been "ok"... Whatever "ok" means. Amy continues to be ok, she has missed some school, but continues to overcome each sickness without a hospital stay. Amy is doing great and each day she shows us how wonderful she truly is. For those who know us and continue to follow us, know that we have a son Dennis who has the same sickness that Amy has. I have considered updating this page to include his name. We have overcome so many issues with Amy and continue to ... but we have begun to also focus now on Dennis. He is a great seven year old who shows me each and everyday how great it is to be a mom.... I think since the day he was born, we knew he had Fanconi Anemia, but we were so focused on Amy that Dennis kindof sat on the "back burner" so to speak. We knew that one day we would have to address him. Frankly, I hoped that the doctors might have been wrong when telling us that he too had Fanconi Anemia. Oh well I was wrong.

Yesterday we brought Dennis into Dana Farber for his yearly visit. He did great, not once crying about the "pain" of blood draws and doctors examining him. I think he has seen way to much already seeing his sister go through so much. His blood counts are still pretty much ok, compared to where Amy was at his age. Its pretty amazing how different they both can be with the same disease. We are seeing his counts slowly drop and can only pray that they will find some cure, so that he won't have to endure a Bone Marrow Transplant. I can't imagine going through this twice.

Please keep Amy and Dennis in your prayers, we need them more than ever.

Love to you all.

Monday, January 12, 2004 7:53 AM CST

Happy New Year!!!

Amy continues to be "healthy". A few "ups" and "downs" but nothing that keeps her in the hospital. We were in the hospital last Friday, getting more blood tests done and more of her immunizations. Of course she did great, but was quite sore over the weekend after having 3 shots in her arm.

I will be taking her into Childrens this Tuesday for a SIX hour growth hormone test. They will hook her up to an IV and inject a few different kinds of Insulin to see how her body produces her growth hormones. Fanconi kids tend to be quite small and we are hoping that Amy will benefit from Growth Hormones in the future. Because of the full body radiation she had, her system is not working the way it should be. She is not looking forward to spending the day, but understands. Im sure I will be running to the video store and renting movies. We will get the tests results in about two weeks.

Michael's Mom, Roma is now in a very nice Nursing Home and seems to be happy and settled in. She really loves seeing the kids and we still are praying for a miracle for her. My Mom, Ruth is doing wonderful. She is home and "almost" back to "normal" whatever that is.... We are truly blessed with her recovery. I want to thank everyone who prayed for our Moms, don't stop!!!

Dennis is doing ok. He has been quite tired lately, which always worries me, but he continues to love school and hates to miss it. He will be going back into Boston for the doctor to take a look at hime within the next week or so, and in the meantime I will take him to his Doctor here, and have a CBC done, just to make sure nothing is brewing.

Thank you all who continue to check in on us.

May everyone have a "healthy and happy" New Year.

Monday, December 8, 2003 7:20 PM CST

Wow, what a difference a month makes...

Amy continues to be a "trooper". She had to have all her immunizations done in a three day period, six shots!!! I had her in the hospital last week, in fear that she had "shingles". After four doctors looked at her, they think she is ok. She still has the rash, but it doesn't seem to be any worse. They are so wonderful to us at Dana Farber, they never think im "crazy"...at least they don't say it to me....ha ha.

Michaels Mom is still in the hospital and seems to be at a stand still with what they can help her with. She will most likely enter somekind of nursing home, hopefully close by.

My Mom is doing great. She fought the "Strep A" in her blood, and is now in a rehab hospital and might return home later this week. What a miracle she was. They were telling us that she wouldnt make it. I kept whispering in her ear, that if Amy could fight she could fight. They have such a special relationship with each other, that possibly of course with Gods help she heard my words and fought. I know it sounds funny but hey you grasp onto anything.

We got the results back from Dennis' Bone Marrow Tests. They showed no signs of cancer (thank God), but he is beginning to show some signs of Bone Marrow Failure. His red cell line and platlets have taken a drop. This is hard to watch, as we hoped he might somehow be "ok". He is such a sweet child, and has been through so much watching is older sister go through so much.

Please keep our Moms in your prayers as well as Amy and Dennis. God does listen and answers our prayers!!!

Monday, November 10, 2003 7:12 AM CST

Amy is finally feeling better. She had a tranfusion of IGG on Friday to boost her immune system. She returned to school today after missing an entire week. Thank you all for your concerns and the PRAYERS!!

On a different note, this has been a very rough month for our entire family. Michaels Mom had a stroke and will be needing to go into a Nursing Home. We ask for prayers for Roma.

My Mom over the last week has become very ill. She is in ICU at the hospital with Strep A in her blood. It is very serious and I ask you for more prayers for her.

Thank you!!!

Monday, November 3, 2003 6:25 AM CST

Hi.

It's been a pretty busy week for us. Amy has been into the hospital twice last week. She is fighting some sort of infection. They did lots of blood tests and a strep test, thank God it came back negative. She has begun to have a really bad cough. I have tried everything over the counter but nothing seems to be helping. I will put another call into clinic this morning. Please pray that Amy overcomes this infection and gets better really soon. She looks very wiped out.

She did have a nice Halloween. Last year she was in the hospital. I knew she didn't feel well, but she begged me to let her go out. I probably should have kept her in. Oh well.

We did get some good news last week. We got a letter from Amy's donor. We know who she is. Her first name is Robin and she is from Indiana. What a wonderful lady. We hope to one day meet her. We have her address and now Amy can write to her.

I will update more when we know how Amy is doing. Thank you all who continue to follow us, it means so much!

Thursday, October 16, 2003 7:04 AM CDT

Tests results finally in....

Amy continues to be doing great. A few complaints of stomach pain and bone pain. She had a great visit to Minnesota and was a real trooper through all of her tests. She even filled out paperwork to meet her donor. The thought of meeting the woman who saved your daughters life, WOW!! Not sure what kind of thank you gift you give, im sure just one look at Amy and that will be enough!!!

Amy's new marrow continues to plug along. All her counts are continuing to come up. Her liver continues to be an issue with an elevated ALT. They will monitor it closely here in Boston.

We did get some bad news. Because Amy had to have TBI(total body radiation), it has done quite a job on her bones. We were told that Amy now has Osteoporosis, (she's only 12)!!! She will need to be seen at Childrens for quite a few more tests by an Endocrinologist soon. There are so many issues that are wrong, that I cant list them all. They also found she is borderline diabetes, and will be closely followed for that too. We know so many Fanconi kids that have diabetes, we were hoping Amy might "skip" that part... oh well. Keep sending your prayers.

As you may remember Dennis went in for testing. All his tests are good... Thank God!! He will have surgery in November to take a much closer look at his marrow, to make sure nothing is brewing in there.

Amy will turn 13 on the 20th of this month. I can't believe it!! She had a really yucky birthday last year, being in the hospital and all, so we will make this years extra special for her. We are so blessed to have her with us.

Thank you all who continue to follow us. Please keep Amy in your thoughts and prayers and pray for her bones and liver.

Wednesday, September 24, 2003 8:33 AM CDT

So sorry for the long time between updates. Amy continues to be doing really great!!! She began school and has only missed one day so far. She is still on her Bicitra for her Kidneys that are still giving her problems.

On Amy's actual transplant birthday/anniversary (9-6-03) she was asked to perform at The Hole In The Wall Gang Camp Gala fundraiser event along with about a dozen other campers. If you remember Amy spent a week there this summer. It is the camp run by Paul Newman and Joanne Woodward for children with terminal and life-threatening illnesses. Amy did a great job standing up in front of about 500 people telling them about why she was at camp, and how lucky she is to be alive. After she spoke there wasn't a dry eye in the house, and plenty of applause for her.

She acted in skits with Alec Baldwin, Whoopie Goldberg, Paul Newman, Tony Randall, Ann Reinking. Mikhail Baryshinikov was there, as well as James Naughton, and Maureen McGovern. Her new buddie is Alec Baldwin. Alec has become a good friend to Amy and they have corresponded. What more could a twelve year old girl ask for?

Amy and her Dad leave this weekend for her One Year Bone Marrow Transplant checkup. This is quite a milestone for all of us. At times during her transplant we were not quite sure if this would be an option. Thank God for everyone who prayed and continues to pray for her... she made it!!!! Amy will have quite a few tests and will be in the hospital for two days.

Everything that she had checked prior to transplant will be checked again. Heart,lungs,liver,kidneys, bone density tests, and of course he "NEW and HEALTHY" Bone Marrow will be checked.

Dennis our six year old, who also has Fanconi Anemia began first grade and thinks it's the greatest. Best part of school he says is "lockers".

We have been so caught up in all of Amy's medical issues for such a long time, that we have fallen behind with some necessary testing that Dennis needs. Frankly, as some of you know, having one child sick is plenty, but two is just heartbreaking.

Dennis will be heading into Dana Farber soon to have quite a few tests done, blood draws and Bone Marrow tests performed on him. This will give us a lot of information on how this dreadful disease is progressing in his little body.
For now, he is playing Soccer and enjoying life.

Thank you all for continuing on our journey with us.

God Bless

Saturday, September 6, 2003 Day +366 9:16 AM CDT

Today is Amy's one year anniversary of her bone marrow transplant.It's hard to believe a year has passed. How does an event seem so close and yet so far away at the same time?

On September 6, 2002 Amy received her bone marrow transplant from an unrelated, mis-matched, anonymous donor. All we know is that she is a woman. We believe she is from the United States but we aren�t certain. In her act of unselfish kindness, she has given our daughter the gift of life. We are very thankful to her and to the Pediatric Bone Marrow Transplant team at Fairview University Medical Center. We would not be here without them.

The fact is that for us, Amy�s bone marrow transplant experience is one that started long before September 6, 2002 and in many ways will extend well beyond one year later. We started preparing ourselves for the possibility of a transplant some time ago. As Amy�s blood counts continued to fail, we became progressively more concerned. We had a preliminary marrow donor search performed. Although the bone marrow registry has over 4.5 million potential donors, none had proved a �perfect HLA match� for Amy. Neither my wife Beth nor I were suitable related donors as we were each 3/6 HLA matches for Amy. What would we do?

We didn�t consider ourselves viable candidates for PGD. Even if we were viable candidates to pursue it, we did not know how much time Amy had left before her bone marrow would give out. In the best-case scenario among fertility treatments, HLA and DEB testing, harvesting and re-implantation would involve at least 11 months�and that was assuming success after the first cycle. We knew of several couples that had undergone many cycles without success.

As Amy�s platelet counts continued to decline (to the point where they were consistently below 20,000 as well as her RBC and her ANC dropping) we went to the Pediatric BMT Clinic at Fairview University Medical Center in Minneapolis, MN in March of 2002 for a consult. Hoping to hear that we had a year or so to prepare for BMT, we were quite surprised when Dr. MacMillan stated that for the best possible outcome Amy should go to transplant within 3 to 6 months �and preferably closer to 3 months.

Because we have lived with this disease, we knew the inherent risks associated with an unrelated, mismatched transplant for an FA patient. Although the preparative regimen had been improved greatly with the introduction of the chemotherapy drug, fludarabine, and the reduction in the amount of radiation administered, it was still a risky, potentially life-threatening proposition. In general, the children who were the healthiest and strongest going into transplant, seemed to fare the best.

Amy had been receiving injections of G-CSF and Epogen every other day for the past 7 years to stimulate her blood counts. She had a relatively good response from those drugs for a very long time. She had been transfusion and androgen-free. However, the cytokines were never meant for chronic use and eventually her �turbo-charged� marrow would fail. What the rate of that failure would be was anyone�s guess.

As parents, we had to make our decision about whether or not to go to transplant based on the best information available to us at the time. If the strongest children had the best outcomes for unrelated mis-matched transplants, would we be lessening her chances of successful outcome by placing her on Androgens, hoping to buy some more time to get a better match? Or hope for success in pursuing PGD? We had to consider would we would be putting her at greater risk by allowing her immune system to deteriorate further as the disease ultimately progressed. Either way, time was running out. We could not procrastinate.

For us, given the specifics of our particular situation with Amy, we decided to proceed down the path leading to transplant with the hope that a suitable HLA match would be found. We did push for the transplant to take closer to 6 months so that she could have a summer of fun before heading to Minnesota. They�re many non-medical issues that had to be attended to in preparation for transplant, too. Our home is almost 1500 miles away. Would we both go with Amy? Where would we live? Would health insurance cover the costs associated with all of the medical procedures and the hospital stay? What about work? Could I afford to take time off from work and would I have a job to return to when I did get back home? Would we bring our younger son, Dennis, with us? What kind of attention could we provide to him if we were focused on Amy? Could we handle the emotional strain of facing the possibility that we might be making the wrong decision?

There is no way to fully prepare for the transplant experience but we have seen firsthand that each family finds a way to deal with the enormity of it all. There are no �right� answers simply the best choices you can make at the time. Somehow, in some way, we found the strength to do what we needed to do. There is a terrible uncertainty throughout the transplant process. It is a constant worry. During the first few months post transplant, this worry wasn�t simply day-to-day but hour-to-hour. And at times it was minute-to-minute.

Timelines are a funny thing. The first milestone for us was the 3-6 months period prior to BMT that we were mentally, emotionally, and financially preparing for transplant. Then we arrived in Minnesota for the two-week period of preliminary work-up just prior to the BMT, which was followed by chemotherapy and radiation. Next came the transplant itself (which in some ways was anticlimactic as it really is nothing more than a transfusion) followed by the ensuing 21 days of hoping for engraftment. Ironically, as the engraftment for Amy became evident by day 10 or so, the ravages of the chemotherapy and radiation became more apparent, too. The steroids administered to Amy as part of the unrelated regimen, made her face swell incredibly and gave her considerable mood swings. And of course her beautiful, thick blonde hair by now was falling out by the handful. After Day +21 some BMT patients are discharged from the hospital to convalesce at their apartments. Although they are no longer sleeping in a hospital room they still have to go to �clinic� every day at first for check-ups and transfusions. As they get better, their visits might lessen to 3 times a week and then twice a week. The general parameter is that the BMT patients remain for approximately 100 days, and if they are doing well, get to return home to continue convalescing for another 6 to 9 months. From our own experience it appears that the patients going through a related BMT seem to have far fewer complications than those who go through an unrelated transplant but it is not easy for any of them.

Unfortunately, such was the case with Amy. She didn�t get to go home at Day+21. She was admitted into the hospital in late August and didn�t get out until late October. It was a difficult time for Amy and a difficult time for us. Dr. MacMillan was positive and encouraging but it was still very hard. We tried our best to keep Amy�s spirits up but it wasn�t easy. While we were on the transplant floor, we witnessed BMT patients, some with Fanconi�s and some with other diseases, who succumbed to these complications, clinging to life, lingering but ultimately dieing from fungal and other infections. It was heart wrenching to see these kids and their parents go through all of this. We learned true courage, nobility, and grace by getting to know them. We learned a deeper respect for the compassion and knowledge of the nurses and doctors who help fight this ongoing battle everyday. Yet, it was terrifying to think that one opportunistic infection could create a catastrophic event for Amy.

Amy engrafted well but ran into many complications that continued to keep her in the hospital until October 20, her birthday. Finally on that day, almost two months from when she was first admitted, she was discharged. She then spiked a fever the following day and was readmitted. She stayed in the hospital for the next few weeks. She was beginning to think she would never get out.

Fortunately, Amy eventually improved enough to return to our apartment. She was incredibly weak, nauseous, and uncomfortable. Of course who could blame her, she was on over 30 oral meds and an intravenous pump that we had to administer. It was daunting for us to make sure that she kept to her med schedule. Among frequent vomiting, diarrhea, and the general lack of adequate hydration we hoped that she received the correct amount to get absorbed inside her body. Over time she slowly improved. Our daily visits to the �clinic� lessened to 3 times a week and eventually down to twice a week.

On December 20, Dr. Macmillan gave Amy (and us) the green light to return home. It was approximately 4 months from the time we first arrived to begin transplant. Amy still had a very long way to go on the path to recovery but had also come so very far to get to this point. We arrived home on Christmas Eve. It took another five months of semi-isolated recuperation at home until Amy would be feeling close to what would normally be considered �well�.

What lessons have we learned, you might ask? Enjoy today. Consider every day as a gift and try to make the most of it. Who knows what tomorrow will hold in store? Take the time to tell the people you really care about that you love them. Maintain your sense of humor, it can get you through the worst of times. Try not to sweat the small stuff. And most important of all, if you�re going to be in the hospital for an extended period of time�bring along plenty of your own favorite toilet paper. The hospital tp is like sandpaper.

Thursday, August 21, 2003 7:52 AM CDT

Well we are slowly approaching Amy's One Year Anniversary of her Bone Marrow Transplant. We truly are blessed that we have made it this far. There are so many families that we knew that have lost children, and there are so many each day now fighting for their lives. We ask that you remember Brandon in your prayers, he again has had some setbacks. He has been in the hospital for over 200 days. Also, please keep Jack in your prayers he too has had some setbacks. Both these children have FA. Again, we are truly blessed to have Amy home and doing so well!!!

Medically, Amy continues to do great. Although, we did get her Bone Density tests results back, and it showed a problem with her spine. The doctors are consulting as to what we will need to do. This is a direct result from all the radiation she received one year ago.

We had a great time at the Annual Fanconi Anemia meeting. It was the first year that I actually felt "hope"... There were four children that had gone through transplant and are doing well and were at camp. It really helps the newly diagnosed families to see children making it through transplant. When we first learned of Amy being sick and we attended the meeting, there was really no hope at all in saving our children. Thank God for researchers who everyday are making great strides in research for us.

This Saturday at our home we will be having a celebration of Amy's successful transplant, it will be from 3-8. There are so many people that touched our lives during this most difficult time. Feel free to stop by and have drink, a bite to eat and check out our "miracle"...

God Bless

Wednesday, August 20, 2003 6:38 PM CDT

Celebrate With Us Amy Vangel�s 1 Year Anniversary of
Her Successful Bone Marrow Transplant on Saturday, August 23, 2003

We have a lot to celebrate. Amy is doing great (as you can see from above) and looking forward to starting 7th grade in a couple of weeks. The party is at our home in Hingham on Saturday August 23, 2003 from 3PM � 8PM. There will be plenty of food, beverages, and fun. If it�s warm, bring a bathing suit, we have a great in-ground pool!

Directions: 6 Liberty Road, Hingham, MA

From Boston, take Rte. 3 South to Exit 14.
At end of exit turn left on to Rte 228 North.

Follow 228 for a couple of miles.

Liberty Road will be on the right side just past Church of the Resurrection.

Our house is the first home on the left, #6 Liberty. It�s a yellow cape with green trim.

Hope to see you there!

Ph. 781 740-2034

Friday, August 8, 2003 11:25 AM CDT

Tests results for Amy's Co2, came back with no change. Our Doctor is a bit concerned and will be consulting with our Doctor in Minnesota. So the waiting game begins...again.

Amy did great through her Bone Scan, again a trooper. Those results will take a few weeks.

We leave today for the annual Fanconi Anemia Meeting in Maine. The kids always have a great time, while the parents sit in endless meetings learning about new advances in transplant, treatment etc...and learning the future for Fanconi Anemia kids. Amy is free of the "blood disorder" but she still has Fanconi Anemia, and unless Gene Therapy happens she will always have it. We will learn a great deal about cancers that she may or may not get.

Of course, as you all know Amy has already been through transplant and is doing terrific. Most of you probably are not aware that our youngest son Dennis(6) also has Fanconi Anemia and will also require a Bone Marrow Transplant... The thought of going through this again is terrifying to us. We will continue to learn as much as we can and continue to be the best advocates for our children. Research is ongoing and improvements are being made everyday.

Thank you again for checking in on us, and please continue to keep us in your prayers..

Thursday, July 31, 2003 9:06 AM CDT

More Hospital Visits....

We had our clinic visit last week, and Amy's counts are slowly on the rise. Her Kidneys still are giving us a hard time. The Doctor says its not uncommon, due to the fact we put so much poison in her last September, her Kidneys were working overtime for soooo long.Her C02 level was extremely low and we have to increase her Bicitra. She will be back in clinic on the 4th to monitor her.

This afternoon, I will be taking her into the hospital to have a Dexascan performed on her. This test, which is not painful to her, but scarey for her. It will be able to tell us, what damage the radiation has done to her bones. We are hoping it shows nothing, but we know how damaging radiation can be.

Thank you all who kept Brandon in your prayers, he was taken off the Ventilator and continues to improve each day.

We will soon be making our plans for our ONE YEAR BMT trip!!! We can't believe it has been almost a year. Thank you all who continue to pray for us!!!

Thursday, July 31, 2003 9:06 AM CDT

Thursday, July 24, 2003 6:27 PM CDT

This is me Amy i'm writting this entry.
Last Sunday I came back from my first sleep away camp. The camp was called The Hole In The Wall Gang Camp run by the actor Paul Newman. On Sunday we were getting ready to drop Dennis off at grandma's and then drive me to camp.
When we were driving to my camp our car started smoking! At first we didn't know that it was our car but when we stopped at the red light all the smoke came around the front of the car. So we pulled into the nearest gas station.
But we did make it to the camp and I was very embarrassed by the smoke. I was really nervous at first but then the next day I was fine. I slept on the top bunk and I made so many friends. I even got an award for being a really good clown. I took a clown workshop at the camp and the clowns that taught the workshop were real clowns from a circus!
I caught my first fish. It was a foot long. It was a bass. I named it Bob. I also rode my first horse called Bubbles. She was really nice to ride with and she had a personality like mine which was that she wanted to do what she wanted to do but when i rode her that changed. I was now the boss of her and we became good friends! Also I did put my own bait on the hook to catch the fish. Instead of putting on worms, I put on a fish called Shiners that are breeded just to be bait to catch fish.
There was a party too and of course I danced all night and I dyed my hair purple,pink,and blue with hair sparkles for the party!!!
They had a talent show and I danced
The Way You Make Me Feel. I got a big applause. The cabins that we slept in were like cottages.
They were so nice looking and big inside. It had bathrooms and even a shower!
I can't wait till I go next summer I had so much fun.
Bubye,
Amy Vangel

Monday, June 9, 2003 4:33 PM CDT

Day +270

Amy continues to be on the road to recovery, slowly but surely. Returning back to school has been wonderful for Amy. She was even able to attend the 6th grade field trip. It has been an adjustment for her, beginning a new school at the end of the year, but Amy is doing her best.

We are now concerned with a problem Amy has been having with her ankle. It has become swollen and red and she has been in a great deal of pain with it. I will be bringing her into the hospital tomorrow for the Doctor to take a look and have an xray. Hopefully (so keep praying) it will be just a simple problem. We know that with all the radiation that Amy had, we can't overlook any pains in her bones that she complains of. Radiation does a lot of damage!!

Amy's blood counts are improving along with her liver counts. We wish her white count would get higher, but in time it will. We still have to be very careful of everything. It would be so nice to just have things back to normal and stop worrying about every little thing. We just have to be patient. We have come such a long way already.

Again, thank you everyone for continuing to check in on Amy, and please don't stop praying!!!! It means so much to us.

Tuesday, May 20, 2003 1:28 PM CDT

Day 251 First Day Of School

Amy had a wonderful day today, it started out early and ended late. With all the tutoring she continues to get and now going to school, she's a busy,busy girl.

She was anxious to enter the school and begin her day. She stayed the entire day and came home full of energy and "spunk".

I will admit to crying my way back to the car after saying goodbye to her, tears of joy that I was actually returning my daughter to school. There were times we thought this might not happen, but with all the prayers God didn't have a chance.

Thank you everyone for all the phone calls and well wishes today, this was quite a big day in the Vangel House.

We would like to thank everyone for wearing their "Friends Rule" hats today at South School in honor of Amy, and The Fluency Factory where Amy is tutored gave her a "back to school" party this afternoon.

Day 250

Amy continues to be on the "up"!! We had a very quick visit to Minnesota with some great news to report. Of course we will not have the results of the tests until later this week, but.......the doctor told us that Amy is doing "GREAT" and.......she can return to school 1/2 days beginning tomorrow (5/21)!!!!!

We are still in a state of shock that Amy will actually be going back to school. It was exactly one year ago, that Amy was informing her school of her Fanconi Anemia and her need for a Bone Marrow Transplant. So much has happened it's really hard to believe, we have come such a long way. It will be hard not having her near us at all times, feeling her forehead every twenty minutes for a fever and asking her "how are you feeling". I can tell you Amy is more than ready to return to school, and begin to do all the normal things 12 year old girls do.

Thank you all who continue to be with us and pray for us during our journey, it's not over yet, but we certainly seem to be going in the right direction.

Thursday, May 8, 2003 7:22 AM CDT

Day +238 It's Back.....

We returned to clinic on Monday for the usual blood tests, etc.. After checking and rechecking consulting with another Doctor, they concluded the Oral GVH is back. Amy is going back on the two mouth washes. Amy of course was not thrilled with the news, but she takes her meds like a champ!!!

Amy's Liver functions continue to be on the rise, and now her Kidneys are showing they too are working overtime. I have to try to get 2 1/2 liters of fluid into her a day..Ha!! I have a feeling we will be back in clinic and getting fluids shortly.

We look forward to our trip to Minnesota to hear what they have to say about her Liver, it worries us that it could be possible GVHD of the Liver. It seems diagnosis is made with a biopsy of the Liver. Im sure Amy will just love to hear that.

Thank you all for continuing to check in on us, it means a great deal. Please continue to send those prayers and positive thoughts our way.

Monday, April 28, 2003 9:13 AM CDT

Day +228

Sorry we have not updated the page recently. We have all been sick and finally beginning to feel better. Amy was the last one to get sick and is on medicine and hopefully her "new" marrow will be able to fight it.

We were in clinic on Thursday for Chest/Sinus XRays, which showed fluid in Amy's sinuses. We will continue to watch her very closely.

Amy's Liver Functions continue to be on the rise. We will go to clinic weekly to monitor them. It seems we have been doing this for awhile now. Our next visit should shed some light on what steps we will be taking to find out why they continue to be elevated and what we can do to keep them under control. Please continue to pray!!

As far as the GVHD of the mouth. We met with a specialist and she felt confident that the mouthwash we have been using has been working. We have stopped the mouthwash, and hopefully beaten it!!!

Thank you all for continuing to check in on Amy and thank you most of all for all the prayers and kind words.

Tuesday, April 8, 2003 8:12 AM CDT

Day +215 GVHD

Amy was seen in clinic yesterday, and our fears of Oral GVHD have been confirmed. She will be on a steriod mouthwash, and hopefully this will take care of the problem. We are researching what other steps will need to be taken, if necessary.

Amy's LFT tests (liver function tests) are still elevated. We had hoped that coming off the Bactrim would lower them, but as we read the results yesterday it seems it hasn't. What we don't want to hear is that she has GVHD of the Liver too. We will be in clinic on Monday for more tests, and also she will have another treatment for her lungs.

She is also fighting a cold and a very sore throat, no fever but the fear that something else is brewing in her throat worries us. If she continues to feel this way, Im sure I will be making yet another trip to the hospital. We have to be very, very careful of any complaints Amy has.

So, here is everyones homework, please pray for Amys GVH to clear up and fast, and that her Liver begins to behave itself. We appreciate all your prayers and positive thoughts.

We also want to thank everyone who has sent prayers for Nathan. Nathan passed away last week, and is now free of pain. Please continue to pray for his family. We can only imagine what they must be going through, and at the same time, we in some small way do understand.

Thank you again for checking in on us!!

Tuesday, April 1, 2003 8:50 AM CST

Day +208 It was so nice while it lasted!!

Sorry for taking so long to update this page. For the last few weeks, Amy has been doing really well. She has been riding her bike with friends and was actually allowed to go over a friend's house and play some basketball. It was such an overwhelming feeling watching her ride her bike. She was never allowed to do this until now(of course we let her sometimes). She is very excited about her "new" life!!

Her clinic visits had been reduced down to every two weeks, and we have finally found her a "home" tutor which will begin this week.

Well, as I stated earlier, things have changed quickly. We had our day in clinic yesterday and Amy's liver functions are very high, her potassium is still quite high, and they noticed a growth inside her mouth. They have taken her off her Bactrim, and she now has to have treatments done every two weeks with a drug called Pentamidine through a nebulizer type treatment at Dana Farber. Amy was very nervous and upset with this new procedure, but as usual she was a trooper and completed her first session. As far as her mouth goes she is back on Nystatin four times a day. Hopefully this will help and reduce her mouth discomfort. If not she will be seen by another specialist for GVHD of the mouth. We will be back in clinic next Monday for more tests, then again for more Pentamidine treatments. Looks like weekly clinic visits are in our future.

So, it seems like we have hit some new bumps in the road. We were hoping this wouldn't happen, but things could be worse.

Please pray for Amy's liver and her mouth. GVHD is not a good thing for her to get, and liver problems are worse.

Another prayer request, a young boy who was transplanted about 2 weeks before Amy is having a very rough time and if you could remember Nathan in your prayers he (and his family) could really use them . www.caringbridge.org/tx/nathan

Thank you everyone for continuing to check on Amy. Keep those prayers coming!!

Saturday, March 15, 2003 12:17 AM CST

Day +191 6-Month BMT Biopsy Results and a Lesson from the Tortoise

After an anxious last few days of waiting, on Thursday afternoon we received the test results from Amy's 6-month post-transplant biopsy and aspirate. The news is all good.

There were essentially three areas that were going to be addressed by testing the marrow:
1.) What is the percentage of Donor cells to the original host cells?
2.) What is the percentage of "cellularity" of the marrow?
3.) Are there any "clones" or aberrant cells evident in the marrow?

We were thrilled to find out that the percentage of Donor cells in Amy's marrow is 100%. It couldn't be better. It signifies continued full engraftment of the healthy blood producing stem cells from our anonymous donor.

Amy's percentage of cellularity is 60%. Blood is produced in marrow located within bones throughourt our body. The structure of the Bone Marrow looks similar to a honeycomb. The doctors during the biopsy remove a "plug" or section of Amy's marrow and view it under a microscope. They look to see how may of those small honeycomb-like compartments are filled with cells and how many of them are empty. What that means is that within her marrow 60% of it is filled with blood producing cells.

For a non-transplanted healthy child Amy's age, 85% cellularity would be considered normal. When compared to previous Bone marrow biopsies Amy has had done, the trend becomes more clear. On September 26, 2002 (which was about 3 weeks post transplant) Amy's cellularity was 40%. On December 12, 2002 (about 3 months post-transplant) her cellularity was 50%. And now at 6 months post-transplant her cellularity is at 60%. According to the test results all three blood line (Red, White, and Platelets) producing cells are clearly evident.

In the story of the "Tortoise and the Hare", the lesson learned is that slow and steady long-term progress wins the race. So too, it is with recuperating after an unrelated bone marrow transplant. Amy has come so far but in many ways she is only at the half-way point toward full hematological recovery and it may be another year-and-a-half before her immune system has relearned what it needs to know to protect Amy.

Fortunately, as the months have progressed her daily medication schedule has lessened. Again, it is at a small rate of slow but steady incremental progress. It's almost like watching the time on a clock advance that does not have a second hand. We are nevertheless grateful for every positive step forward she (and we) have made. Last week we began the tapering off of Amy's Cyclosporin "A" (CSA) medication called Gengraf. It is the major anti-rejection drug she is on. It is extremely strong and has many serious side effects associated with its long term use. Because of the delicate balancing act of administering the correct overall dosage of meds to Amy without causing medical harm to her, it will take 3 months before she is completely weaned off from the CSA.

Hopefully, for the last half of this race the wind will be at Amy's back gently helping to propel her forward.

Tuesday, March 11, 2003 6:40 AM CST

Day +187 Amy's 6 Month Post-BMT Bone Marrow Biopsy and Check-up

We arrived home Sunday late afternoon from a very busy trip to Minnesota. We were lucky to fly out Thursday night as 2 of the three flights to Minneapolis were canceled because of an unexpected heavy snowfall.

Amy sailed through all her procedures on Friday and as usual did very well. We will not have any results from those tests until later this week. Her blood counts were checked and the Doctor did show some concern regarding Amy's somewhat low Red Blood Cell count. They still are low and have not really ever begun to go up. Hopefully they will be able to tell what is "really" going on by taking a close look at her marrow.

Before Amy's tests on Friday we took a quick visit up to 4A, where Amy had spent about 3 months during her transplant. We visited with Presley, www.caringbridge.org/kypresleynash whom we had met when Amy was first being transplanted. Amy even got to read her a book. The two of them looked so happy together. Presley has been through so much, please continue to keep her in your prayers. We also visited Aaron Shelson www.caringbridge.org/canada/aaronshelson

We have known Aaron's family for many years seeing them at almost every FA Family Meeting since we first began attendding them. Aaron just received his transplant on March 6th. Please pray for swift engraftment with no complications for him. Aaron is 9 years old.

Thank you again for all your prayers and guestbook entries, Amy loves reading them and it lets her know people are still thinking about her 6 months later. While she is doing well, the doctor confirmed she still has a long way to go.

Tuesday, March 4, 2003 8:49 AM CST

Day +179

Amy's ECG test came back "normal"!!! Thank God. They will continue to monitor her levels on a day to day basis. We go into clinic tomorrow for more tests, then we take off Thursday night to Minnesota for her 6 month check up. Friday will be filled with quite a few tests including another Bone Marrow Biopsy to check for the percent of donor cells and cytogenetic studies to assess healthiness of the new marrow. We ask for everyone to pray for 100% donor cells.

We would also like to ask everyone to pray for a very sweet girl, Presley, who was our neighbor while we were on 4A. Presley is still there on 4A and having hard times. Her link if you would like to send her well wishes is www.Caringbridge.org/ky/presleynash

Thank you all for your continued support and prayers.

Saturday, March 1, 2003 8:32 AM CST

Day +176 An Unexpected ECG Test For Amy This Morning At Children's Hospital

Dr. Haining called yesterday afternoon after Amy's latest blood level tests came back from the lab. Although her CSA level has stabilized (it was 365), her Potassium level remains quite high and seems to be trending higher. This is of concern to him as high potassium can lead to cardiac arrhythmia (sp?). He asked us to come in to the BMT ward at Boston's Children's Hospital to have an ECG test performed and to wait around for the results to get a better handle on how to proceed forward.

Amy is quite nervous about this latest turn as you can imagine. We fear Amy's body has tolerated just about as much of these toxic drugs as her kidneys and liver can handle. We had hoped we could continue to be on the path of weaning her off of these extremely strong drugs. We certainly don't want to spiral downard after coming so far. Hopefully, this ECG will simply be one more of many false alarms we have faced within the past six months.

Please keep Amy in your positive thoughts and prayers as she has the ECG performed.

Wednesday, February 19, 2003 7:06 AM CST

Day +166 Weathering the storm

As I write this to you, we have just received 28 inches of snow. The snow plow has created 6 foot snow banks along the sides of the road. Everything is draped in a mantle of white. It is beautiful to behold but a true test of physical and moral resolve to shovel. There is nothing quite so disheartening as completing the shoveling to get out of your house, only to have the town snow plow come down the street and dump another foot of wet, heavy, slushy snow at the base of your driveway.

A year ago I might have shouted profanities (or at least mumbled them) at the driver for dumping more snow from an already plowed street. Today I just shrug my shoulders and say to myself "whatever". In the grander scheme of things it is simply an infrequent annoyance and relatively easy to get past. I wish all of life's frustrations were as easy to get past.

It is hard to believe that we are two weeks from the 6 month post-transplant mark. On the one hand we are thrilled to be back home and very grateful to our friends and family who have been so thoughtful and caring. Amy's elementary school, South School, and Hingham Middle School have been and continue to be wonderful. Hingham Middle School sent Amy gifts for Valentine's Day and South School even held a Valentine's Day assembly in honor of Amy. She had been feeling fairly down and depressed and these acts of kindness really perked her up.

On the other hand we are frustrated that at this point that Amy's overall blood counts are not stronger and day-to-day quality of life has not improved appreciably. Amy has been on average going back and forth to Dana Farber Cancer Institute 3-4 times per week. Because her liver function tests came back very high she has been taken off her anti-fungal medication, VFEND. Her CSA level continues to fluctuate and her Gengraf is adjusted accordingly. We feel that we have hit a plateau at which Amy does not need to be hospitalized but her energy level remains quite low. We had hoped she would have blossomed toward her previously spunky and more energetic self by now.

For those of you who will be going through transplant or have already been through it, listed below are her most recent counts taken approximately 6 months post-transplant.

White Blood Cell 2.09L (4.9 - 10.3)
Red Blood Cell 2.90L (4.1 - 5.00)
Hemoglobin 9.4L (11.4 - 13.9)
Platelets 175,000L (189K - 342K)
Hematocrit 27.7L (34.7 - 41.5)
Reticulocyte 0.7L (0.8 - 2.2)
Liver Function Tests
AST 144H (2-40)
ALT 175H (3-30)
LDH 260H (100-210)

(Normal ranges are placed within parentheses)

We knew it would be a long process going through transplant. We had scripted in our minds that if she was healthy enough to return home by Day +100 that certainly by Day +166, significant progress would be made. We had felt that while she would not be 100%, she would be well on her way toward full recovery. We are coming to the realization that we still have a long way to go. In early March we will be returning to Minnesota for Amy's 6 month check-up and bone marrow biopsy. Perhaps then we will have a clearer indication of what is going on.

Wednesday, February 5, 2003 11:40 AM CST

Day +152

Finally after a very long three weeks, things are looking up!! Thank God. Amy is showing small improvements everyday. Her counts are slowly improving and her "spunk" is returning.

We have only been to the clinic once this week, and so far we don't have to return until next Monday. Amy's 6 month check up is coming up in early March, and we are beginning to plan our trip back to Minnesota for more tests on her marrow. We hope and pray that we will get good news from these tests.

Thank you all for continuing to visit Amy's website. We know you have been praying and sending positive thoughts our way and we appreciate it very much. We know we still have a long way to go. We tend to live "moment" by "moment" and look forward to living "day to day" soon.

Wednesday, January 29, 2003 at 06:37 AM (CST)

Day +145

Another long week ahead, Counts dropping.

I have spent the last two days in clinic with Amy and will be leaving home again this morning for another long day of tests, cultures and more fluids to be given to Amy. She continues to feel sick to her tummy and has not eaten since Friday night. Her fluid intake is way down so she receives fluids over a three hour period in Clinic. Yesterday, she also received more IVIG for her immune system. Her spirit is down and she doesn't seem to be the "spunky" Amy anymore. We hope once she begins to feel better, she will be "happy" once more. I can't say that I blame her, it's been a long time since she has felt like herself.

On another note, her counts have begun to suffer with whatever is going on inside her little body. I will post them at the end of this update. Please pray that her cell lines will recover. Of course, we are always worried that she is losing her Graft when we get news like this.

Thank you all for continuing to check on us and signing the guestbook. We read them to Amy on a daily basis, and she feels comfort that people are still praying for her. God knows we need it.

I can honestly say, that I thought once we got home, things would improve greatly. Well, I guess I was wrong. I know things will improve, but I just have to be patient and trust in God (not always easy).

Everyone have a wonderful day and cherish each moment you have with family and friends.

WBC 1.63
RBC 2.72
HEMO 9.0
HCT 26.2
Platelets 200,000 (:

Her Chemistries are also elevated (for the first time since transplant)which means her Kidneys and Liver are having to work much harder than they should be.

Thanks again for all the prayers and positive thoughts.

Friday, January 24, 2003 at 09:01 AM (CST)

Day +140 Dodged Another Bullet

Early yesterday morning Amy had an MRI performed on her brain and spine. Some of you may have had MRI's done and are familiar with the procedure. For those of you who are not, MRI stands for Magnetic Resonance Imaging. It is a highly specialized machine that takes a 3 dimensional view of a body part. Magnetic resonance imaging (MRI) is a test that provides pictures of organs and structures inside the body. It produces these images by using a magnetic field and pulses of radio wave energy. In many cases, MRI provides information that cannot be obtained from X-ray tests.

For an MRI test, the area of the body being studied is positioned inside a strong magnetic field. The MRI can detect tumors, infection, and other types of tissue disease or damage. It can also help diagnose conditions that affect blood flow. Tissues and organs that contain water provide the most detailed MRI pictures, while bones and other hard materials in the body do not show up well on MRI pictures. For these reasons, MRI is most useful for detecting conditions that increase the amount of fluid in a tissue, such as inflammation, infection, tumors, and internal bleeding.

Amy's earlier CT scan revealed a mass located on the parietal lobe of her brain. The parietal lobe is located in the middle top part of the brain. Among other things it controls the sensing of pain and touch. The MRI test was being performed to determine if this mass was pressing on the parietal lobe causing Amy's pain. The MRI would also tell us if this mass was a benign cyst or a tumor.

The MRI procedure is not painful but it is scary and uncomfortable for anyone who does not like being restrained for 20 minutes (or more) within closed-in spaces and being subjected to extremely loud mechanical clicking sounds. Brain scans, in particular, are very claustrophobic, as they require an additional smaller "coil" that wraps around the head.

Amy was restrained at the head, chest, and feet, on a small table with the additional coil placed around her head. Because the noise is deafening, ear plugs were put in both her ears to muffle the loud clicking sounds. The table which is on a conveyor belt then rolled into a tunnel-like opening 3 feet in diameter and approximately 6 feet long. The radiology nurse explained to Amy that it was very important for her to be extremely still for the pictures to be taken. If she moved her head even slightly they would have to start the procedure all over again.

Although Amy has a high threshold for pain she does not like to be in closed-in spaces nor to be restrained. She was quite upset at the prospect of having to go in that small, loud tunnel. Beth and I tried to reassure as best we could. We asked if we could be with her during the procedure to help her get through it. The radiology nurse said that we could but we would need to remove any metal or magnetically charged items including wallets, watches, etc. We were given ear plugs to put in our ears to muffle the noise, too.

Although Amy could not see us, she could feel Beth and I stroke her feet as the scan was performed. Beth cried as she watched Amy go through this as she, too, is claustrophbic and does not like confined spaces. Because Amy moved during the first set of images we had to repeat the procedure. Finally after about a half hour scans were completed of Amy's brain and spine. Later on we would get the results intrepreted by the radiologist.

Was it a tumor? Was it an aneurism? Or was it a benign cyst? Hopefully, the test would tell. Later, Amy's doctor told us that he reviewed the MRI with the radiologist who confirmed that it was neither a tumor nor an aneurism but an arachnoid(sp?) cyst. The cyst prented no danger. This was great news for the three of us and we were thrilled. While it did not shed any light on the source of Amy's pain, at least it ruled out a brain tumor, and for that we were extremely grateful. We are also grateful that since Amy stopped taking the Phlagyl yesterday she feels less nausea. So, Amy dodges another bullet. We are on an upswing and savoring the good news.

Life is good.

Wednesday, January 22, 2003 at 01:50 PM (CST)

Day + 138 More Tests Planned

Amy's neck and back pain continues. The newly prescribed pain pills do not seem to provide her with any relief. The doctors seem to think the CT scan performed on Tuesday showed something but she needs more testing to figure out what exactly it is. Tomorrow morning Amy will have an MRI test performed to determine if she has a cyst on her brain that could be causing the pain.

Please keep those positive thoughts and prayers coming!

Friday, January 17, 2003 at 10:16 AM (CST)

Day +133 "The Gray Area"

We are thrilled to be back home but Amy is still plagued by medical problems as she continues on her long, slow road to recovery. We have been home for about 3 weeks and been to the Jimmy Fund Clinic at Dana Farber Cancer Institute and the BMT ward at The Children's Hospital in Boston about 12 times. Only 4 of those visits were scheduled. The rest were the result of additional complications Amy is grappling with.

Amy's stomach pain and nausea continue but in addition she also has had significant neck pain for the past few days. On Monday, a culture came back positive for " C-Diff" and she has been placed back on Phlagyl which may help to explain Amy's additional stomach pain and her feeling "strange". It doesn't explain her significant neck pain, however. At best, it might be a stiff neck. At worst, it could be Meningitis. Odds are it's in the "gray area" in between the two. Maybe it is a recurrence of the shingles. Or perhaps it is one of those hard-to-pin-down maladies that will cure itself after time.

Beth and I know we have a severely immune-compromised child who is in significant pain. As I write this, Amy and Beth are back at Dana Farber where Amy's CSA level is being taken again and they are going to do a chest xray to see if Amy might have early-stage pneumonia. As parents we want to comfort and protect her. We are trying to get to the root of this newest problem. The days have been long... especially for Amy and Beth as I am back now working full-time. Please keep those positive thoughts and prayers coming.

Thursday, January 09, 2003 at 08:06 PM (CST)

Life Back Home Day +125

Beth had tears in her eyes watching Amy and Dennis play in the snow yesterday. Who would ever think there would be so much more snow here than in Minneapolis? For us, it is a dream come true to be back home! Amy had two friends over playing as if nothing ever happened. It was wonderful to witness such happiness and joy.

Amy still has her stomach pain to the point where we are giving her codeine each night. Although we are home there is always concern. We know her CSA level is down, it's 145 (Our hematoligist tells us that the safe range falls between 200 - 400) and she has had a lot of mucous. We hope the mucous is not a precursor to Graft versus Host Disease. Although Beth and Amy were at the clinic today, her physician called this afternoon alerting us to the low level, and after speaking with Beth asked that Amy come back in to The Jimmy Fund Clinic at Dana Farber Cancer Institute for further tests tomorrow.

Please keep your positive thoughts and prayers coming.

Monday, January 06, 2003 at 08:07 AM (CST)

Day +122 A False Alarm / Life Back Home

Since returning home last week, we have tried to return to "normalcy" as much as possible. Amy has up days and down days. While we do not allow plants of any kind in the house nor people who have colds, Amy has had several friends stop by for scheduled short visits. She was thrilled to see them. Unfortunately, she still occasionally has stomach pain and nausea.

Friday night amid a blizzard-like Nor'easter, Amy was complaining of severe stomach pain. On our pain scale of 1 to 10, she gave it a "10". When we asked her as she was curled up in a ball on our bathroom floor if she felt it was serious enough to go to the hospital, her answer was "yes". She had diarrhea earlier throughout the week.

For Amy to say those things, given her high threshold of pain and her reluctance to go to the hospital any more than is absolutely necessary, Beth and I were concerned.

Was this a transitory pain that would vanish quickly? Would going to the emergency room possibly expose Amy to other viruses, bacteriae, etc putting her in even greater peril? Was this pain something new and different from the transplant or is it part of "the healing process"?

After pondering all of these things, we told Amy that we would give her some pain medication right away. We would give the medication some time to work and in an hour reassess our options. If in the meantime, she felt significantly worse, we would leave for the hospital.

Fortunately, Amy's pain eventually subsided. Saturday she did not feel great but certainly better than she felt on Friday. By Sunday, Amy was doing quite well. She was rested and to the surprise of all of us, was up and about at 7AM.

Was this crisis averted or simply postponed? Only time will tell but for now we will take it as a small battle won.

Friday, December 27, 2002 at 07:14 AM (CST)

Day +112

These past few days back home have been wonderful. After our arduous 1500 mile, two-day drive from Minneapolis to Boston in our fully packed mini-van, imagine our surprise pulling into our driveway at 12:30 at night to find our home nice and warm, decked with Christmas decorations including a Christmas tree with some wonderful gifts from our friends at South School. Special thanks to our "Christmas elves" - Trisha, Betsy, and Cindy.

Celebrating Christmas together in Hingham was a much quieter affair than in year's past but memorable nonetheless. Amy was thrilled (and so were we). She shared with me that she had doubts about being able to return. There were times during our hospital stay in Minneapolis when she wondered if she would survive to get to be home at all. What a special gift it has been to be together in our own house.

Of course, Amy is still being followed up rigorously. We know from speaking with our FA friends that post-100 day complications are quite common. The difference now is that the primary BMT clinic following up on her is the Jimmy Fund Clinic at Dana Farber Cancer Institute. Amy is still basically taking the same meds (about 30 pills/day) as before. She still has the nausea and stomach pain, too. She still has a long way to go (about 250 days) before she can be considered healthy enough to have recovered from the BMT.

We will be returning to the Jimmy Fund Clinic for the second time this week. Amy's CSA level is quite high and they will want to adjust the dosage. The CSA is a strong anti-rejection drug Amy takes to prevent graft rejection and minimize Graft versus Host disease. High levels in the blood stream can be toxic. Also, Amy will need to be transfused with IVIg to help her immune system. We have been told the transfusion will probably take 2-3 hours.
She'll need to be monitored closely.

So, in summary, we are tired but happy to be back home. Amy still has along way to go before achieving a full recovery but we are making progress. On Monday, I return back to work leaving Beth to assume the majority of Amy's caregiving. It is a lot for her to have to do.

Please continue to keep us in mind as we feel strongly that your postive thoughts, prayers, and well wishes have gotten us where we are today.

Friday, December 20, 2002 at 10:38 PM (CST)

Day +105 "Yes, Virginia, There Is a Santa Claus..."

Today was a day of many wonderful surprises. First, Amy felt much better today than she has in several days - no nausea, no diarrhea, no Shingles. Second, the medication for the Shingles seems to have done its job. Although she will be on the medication for it for another week, she is almost symptom-free. Third, Amy's 100-day bone marrow biopsy results have come back. Her marrow now has 50% cellularity (which is great for this stage of engraftment) with 100% donor cells. Fourth, based on all these things at our BMT clinic appointment this morning, Dr. MacMillan has given us the "green light" to head back home to New England. Lastly, through the National Bone Marrow Donor program, we received a card from the woman who generously donated a portion of her marrow for Amy.

Although Amy's bone marrow donor was not allowed to reveal her name or forward a picture (Hopefully at day +365 we'll be able to do that and maybe even meet her!), she was able to forward to Amy a wonderful card. I'd like to share with you what she wrote in her card to Amy.

"I have been praying for you for many weeks, as have my parents, church & friends. When I got the call telling me we had matched, I was excited to realize I was being given the opportunity to share God's love with someone special - you! - even without actually meeting you!

Please allow me to offer you the poem my mother said with me everyday before I left for school when I was your age:

The light of God surrounds me
The love of God enfolds me
The power of God protects me
The presence of God watches over me
And wherever I am...God is

He is with us both today - God bless and many prayers."

This remarkable woman gave Amy the gift of life and we don't even know who she is. We are so grateful to her. The marrow she donated to Amy was replenished within her own body within 3 weeks. If you haven't done so before, please consider becoming a bone marrow donor. All it takes is a simple and routine preliminary blood test to be registered. Chances are you may never be called. But on the outside chance that you are you could save someone's life...like Amy's.

In the spirit of Christmas and this wonderful anonymous donor, our generous and caring friends and relatives, and our compassionate and intelligent health care providers, we'd like to share this with you. Although written 105 years ago this article is as true today as it was back then.

Is There a Santa Claus?

From the Editorial Page of The New York Sun,
written by Francis P. Church, September 21, 1897

"Dear Editor--I am 8 years old.
"Some of my little friends say there is no Santa Claus.
"Papa says, 'If you see it in The Sun, it's so.'
"Please tell me the truth, is there a Santa Claus?

Virginia O'Hanlon
115 West Ninety-fifth Street

Virginia, your little friends are wrong. They have been affected by the scepticism of a sceptical age. They do not believe except they see. They think that nothing can be which is not comprehensible by their little minds. All minds, Virginia, whether they be men's or children's are little. In this great universe of ours man is a mere insect, an ant, in his intellect, as compared with the boundless world about him, as measured by the intelligence capable of grasping the whole of truth and knowledge.

Yes, Virginia, there is a Santa Claus. He exists as certainly as love and generosity and devotion exist, and you know that they abound and give to your life its highest beauty and joy. Alas! how dreary would be the world if there were no Santa Claus! It would be as dreary as if there were no Virginias. There would be no child-like faith then, no poetry, no romance to make tolerable this existence. We should have no enjoyment, except in sense and sight. The eternal light with which childhood fills the world would be extinguished.

Not believe in Santa Claus! You might as well not believe in fairies! You might get your papa to hire men to watch in all the chimneys on Christmas eve to catch Santa Claus, but even if you did not see Santa Claus coming down, what would that prove? Nobody sees Santa Claus, but that is no sign that there is no Santa Claus. The most real things in the world are those that neither children nor men can see. Did you ever see fairies dancing on the lawn? Of course not, but that's no proof that they are not there. Nobody can conceive or imagine all the wonders there are unseen and unseeable in the world.

You tear apart the baby's rattle and see what makes the noise inside, but there is a veil covering the unseen world which not the strongest man, nor even the united strength of all the strongest men that ever lived, could tear apart. Only faith, fancy, poetry, love, romance, can push aside that curtain and view and picture the supernal beauty and glory beyond. Is it all real? Ah, Virginia, in all this world there is nothing else real and abiding.

No Santa Claus! Thank God! he lives, and he lives forever. A thousand years from now, Virginia, nay, ten times ten thousand years from now, he will continue to make glad the heart of childhood.

This is our last entry from Minnesota before we begin our drive back to Massachusetts Saturday morning. Because of the uncertainty of our departure Amy and Beth's corporate angel flights were cancelled, so we will be loading up the mini-van with the three of us making our 1500 mile eastward trek back home by car. We are grateful for Amy to be healthy enough to be able to leave and looking forward to finally getting back home. She is ecstatic and so are we.

Merry Christmas!

Tuesday, December 17, 2002 at 08:51 AM (CST)

Day +102 No Christmas In Hingham

Today was supposed to be our last appointment with Dr. MacMillan before leaving to return home later this week. Unfortunately, Amy has suffered a setback and we will not be returning to Hingham for Christmas.

Sunday night Amy told us her lower back was quite painful. At first we thought it might have just been soreness from the site of her bone marrow biopsy. Her skin looked irritated where the bandage had been for her biopsy. But this looked different from before. She also felt very itchy. By Monday morning it was worse. Although we weren't scheduled to go to clinic, Beth called to see if they could fit us in. When we described Amy's symptoms, they asked us to come in right away.

Dr. Wagner was in clinic and determined that she had "Shingles". For BMT patients it is a serious virus that needs to be treated right away.

"Shingles" is a reactivation of the virus which causes chickenpox. (Amy had a severe case of chickenpox when she was 5. Her platelet counts had plummetted to 12,000. It took along time for her counts to come back up even slightly) With shingles, the first thing you may notice is a tingling sensation or pain on one side of your body or face. Painful skin blisters then erupt on only one side of your face or body along the distribution of nerves on the skin. Typically, this occurs along your chest, abdomen, back, or face, but it may also affect your neck, limbs, or lower back. The area can be excruciatingly painful, itchy, and tender. After one to two weeks the blisters heal and form scabs, although the pain often continues.

The deep pain that follows after the infection has run its course is known as postherpetic neuralgia. It can continue for months or even years, especially in older people. Shingles usually occurs only once, although it has been known to recur in some people.

So, our plans have changed. Amy is on medication for the next ten days with daily follow-up visits at the BMT clinic. It looks like we will be here until at least the 26th of December. Fortunately, Amy does not have to be hospitalized and she can take the medication orally rather than Intravenously.

It is a major disappointment for her not to be home by Christmas but we will try to make the best of it. She (and we) know it is far better that this happened now while we were still in Minnesota rather than arriving home only to get more ill. And we also know in the grander scheme of things, Amy is doing well. We just need to keep positively reinforcing ourselves with that knowledge to get us over these seemingly incessant setbacks and hope that her oral meds can successfully treat this virus.

Please keep us in your prayers.

Sunday, December 15, 2002 at 08:08 PM (CST)

Day +100 A Passage of Time

These last few months have been an emotional rollercoaster ride for Amy, Beth, and me. Last week alone we were personally touched by life as well as death. On Tuesday, we met a father who had just transported umbilical cord blood taken from his newborn's placenta from Alabama to Minnesota. The baby's cord blood will be used for a related 6/6 BMT to save his FA affected older brother. We had a wonderful visit. Later that evening Amy spiked a fever but within 24 hours it had resolved itself. The next day Henry Strongin Goldberg died. On Thursday Amy had her bone marrow biopsy performed. Friday we had more tests done at the hospital (chest xray, pulmonary, endocrine). We also met with Dr. MacMillan who gave us the "green light" to plan on returning home after next Tuesday's appointment. We were thrilled to hear that she felt Amy was well enough to return to Hingham to recuperate. And on Saturday, Alex Eddy died.

Within three days this past week, two children with FA whom Amy, Beth and I have had the privilege to meet and know have died from post-BMT complications. Medicine and science have progressed greatly but in the end it was not enough to save them from the ravages of this killer disease. The lengths to which their families have gone to help their children has been nothing less than Herculean. Both boys have had the endless love and untiring support from their families. In the course of their excruciatingly long post-BMT treatments Alex and Henry both had to endure countless painful and invasive procedures. For their parents it was equally excruciating.

Friday evening, Alex Eddy, passed away after a long, hard-fought struggle with post-BMT complications. Alex was a 14 year old boy with FA (Fanconi Anemia) who had an unrelated 6/6 bone marrow transplant. On Wednesday evening, 7 year old Henry Strongin Goldberg, who also had Fanconi Anemia passed away after battling many post-BMT complications.

Why should so many of these children die so young? How do we make sense of all of this anguish? How do Beth and I explain these deaths to Amy? Surrounded by death how do we keep our hearts from breaking? Or even more worrisome is how do we keep from growing detached to our feelings in order to desensitize ourselves to the grief of death?

As you can imagine all of this is a lot to process. Even with Amy's constant stomach pain and nausea we feel fortunate that she is doing as well as she is. We know her condition could be much, much worse. We are grateful to the doctors and nurses for being so wonderful and caring to Amy (and us).

Our experience has shown us that life can be hard. However, along the way if you allow yourselves to be open to them, there are beautiful and life-affirming moments waiting to be embraced. Our rite of passage getting to +100 days post-BMT has been turbulent but ultimately successful. We have seen firsthand the courage, persistence, and resilience of the children on the BMT ward as they fight for their lives. We have been witness to the faith, hope, and love not only among Amy, Beth, and me but also among the other children of the ward and their parents. We have felt the generous outporing of support from all of you. These are the memories we choose to embrace. We have much to be thankful for.

Friday, December 13, 2002 at 07:08 AM (CST)

Day +98

Amy sailed through her 100 Day Biopsy with flying colors. We will be continuing with tests for a good part of today too. Her fever has not returned, but her nausea and pain continue.

Thank you everyone for your continued prayers for Amy, Henry's family,Alex and all the children here. It seems each day we have been hearing about more and more children having very rough times.

Wednesday, December 11, 2002 at 04:38 PM (CST)

Day +96 Prayer Request

At 6PM CST 7 year-old Henry Strongin Goldberg will be taken off life-support. After waging a lifelong battle against Fanconi Anemia (FA) his body has succumbed to a lethal and incurable fungal infection, Aspergillus. Those of you who have had the pleasure of meeting and speaking with Henry, as we have, know what a remarkable child he is.

Please remember the Strongin Goldberg family in your prayers.

Wednesday, December 11, 2002 at 01:18 AM (CST)

Day +95 Fever Returns

Unfortunately, Amy's stomach pain and nausea has gotten worse over the last few days. Early Tuesday evening she spiked a fever. If her temp rises above 101.5 degrees Amy will need to be readmitted to the hospital for a minimum 2 day stay. Even more troubling is what could be causing this latest fever. Is it viral? Is it fungal? Is it bacterial...and if so is it the return of her staph infection caused by the central line? Is it GVHD? For a BMT patient any of these infections (viral, fungal, bacterial, GVHD) can be quite serious.

Amy was scheduled to have her bone marrow biopsy performed on Thursday. We had hoped to leave by the middle of next week to go back home to Hingham. All of that is very much up in the air right now. Amy was quite upset this evening realizing she may have to be readmitted. On top of not feeling well and not looking forward to another hospital stay, she was afraid that she was letting everyone (us, family, classmates, and friends) down if she got sick and could not be home by Christmas. Beth and I reassured her that as long as we were together it didn't matter where we spent Christmas. The important thing is to make sure that we go home when her body has healed enough so that we can safely leave.

We love the guestbook entries we receive...and we read them every day to Amy. Please keep those positive thoughts and prayers coming. We have been truly blessed. However, if you could refrain from mentioning getting home for Christmas, Beth and I would appreciate it. It is becoming an unnecessary stress for Amy. Much as we would like to, we can not rush her progress. We will leave when she is healthy enough to safely return home to recuperate.

I have some urgent prayer requests:

Please pray for Alex who is a 14 year old with FA that is 166 days post-transplant currently on a respirator in the Intensive Care Unit here at Fairview. His mother, Sharon, was the first person to reach out to us when we were initially admitted to the BMT floor. She has been and continues to be an inspiration to Beth and me.

Please pray for Henry, a 7 year old boy with FA who was transplanted at Fairview 2 1/2 years ago and has had numerous complications post-transplant. Henry returned to Fairview a month ago. Shortly after he arrived we saw him with his Dad in the pre-op area during one of Amy's recent procedures. He was getting what was thought to be a routine procedure performed, too. I remember speaking with Henry and how excited he was to see the new "Lord of the Rings" sequel. He had shared with me some of what he had gone through in the past 2 years. What a remarkable and inspiring young man. Unfortunately, he has since gotten progressively more ill. He is now in the Pediatric Intensive Care Unit battling what is believed to be Aspergillus, the deadliest of all fungal infections for FA patients. The prognosis is bleak. May God give Henry's family the strength to shoulder this burden.

It is so sad and so unfair that these kids (and their families) should have to suffer so much.

Thursday, December 05, 2002 at 10:32 AM (CST)

Day +90 WOW!!

Amy continues to improve daily. Her pain/nausea continues and hopefully will get better and not be the reason to keep us from coming home for the holidays. We certainly don't want to "rush" coming home. Next week Amy will have her "100 Day" tests done, and if everything looks good we may be able to leave as soon as the 21st!! We are beginning to look into ways to get home. We heard about a great organization called Corporate Angel Flight, this allows Amy to fly home on a "private" corporate plane avoiding people/germs.

We certainly will be happy to be home, but still have such a long way to go, and we know at any moment things can change!!

Please keep the prayers coming we certainly need them.

Monday, December 02, 2002 at 08:32 AM (CST)

Day +87 Reality Check

We have been so excited with Amy's recent progress that it was easy to forget the fragility of her medical condition. Yesterday, Amy slept until 3PM. The day and night before she complained of severe stomach pains and nausea. Call it denial or just wishfull thinking, but we had hoped all of this was behind us. Even with our arsenal of pills nothing brought relief to Amy.

Were we headed back to the hospital again? Did she have a virus? Was it Graft versus Host disease rearing its ugly head? Would this latest episode keep us from returning to Hingham before Christmas? Was Amy's immune system developed enough by now to fight off this latest attack?Only time would tell.

Fortunately, Amy felt much better this morning. Her pain is less. She will just have to take it slow. With a little bit of luck we will be back home by Christmas.

Thursday, November 28, 2002 at 10:00 AM (CST)

Day +83 A Day of Thanks!

This Thanksgiving Day is very special for us. We are very thankful to God for giving us the strength to persevere. We are thankful to have a team of knowledgeable, competent and compassionate doctors and nurses guide us through Amy's bone marrow transplant. We are thankful for the Fanconi Anemia Research Fund and how they have advanced a greater understanding of this disease.

We are thankful that all four of us (Amy, Beth, Dennis, and me) can be together today. We have missed little Dennis so much. He brings such joy into all our lives (especially for Amy). He is like the "Energizer Bunny". From the time he wakes up in the morning he keeps going and going ...and going! We are thankful for Beth's Mom, Ruth, who has been so wonderful to take care of him back home in Hingham while Amy, Beth, and I have been here in Minneapolis. She is incredible and we are so grateful to her. We are grateful to my parents, Lou and Roma, who have been a source of constant emotional support for us.

Beth and I are thankful for the incredible outpouring of support from our community, co-workers, friends and family. We are so lucky to be cared about by so many people. The guest book entries, cards, letters, and gifts have been wonderful. They have helped us get through those rough spots.

We feel very fortunate to receive your love. We feel very blessed for you to have included us in your prayers and "positive thoughts". We are so thankful to you all on this Thanksgiving Day.

Thank you!

Sunday, November 24, 2002 at 05:54 PM (CST)

Day +79 Nice and Quiet

It has been uneventful for us since the last update and for that we are most grateful. Amy's nausea has lessened. She still has stomach pains but they are less constant. She has been working hard on eating and drinking. As a result this weekend she was taken off the IV fluids. On Tuesday we will be meeting with Amy's BMT surgeon to see how well her body has done on its own (without the help of intravenous hydration with magnesium and potassium).

Amy's blood counts are strong and she has been fever-free for the past two weeks. If we can continue without any further setbacks it is possible we may be home around Christmas. We are keeping our fingers crossed and hoping for a continued slow steady improvement of Amy's immune system. We certainly don't want to leave Minneapolis prematurely but the idea of being home for the holidays would be wonderful.

On Tuesday, Amy's 5 year old brother, Dennis, will be arriving with Beth's mom, Ruth. We can't wait. Tuesday will be a big day for a lot of reasons. We have a lot to be thankful for including the wonderful outpouring of support from all of you.

Wednesday, November 20, 2002 at 04:40 PM (CST)

Day + 75 A Fun Night Out

Amy continues to improve. Fortunately, our "Care Partner" volunteer, Angie, hasn't given up on us. She offered over the weekend to stay with Amy for a couple of hours early Tuesday night so Beth and I could go out for dinner and spend some time together as a couple. Luckily, Amy has been feeling better and was up for spending some time with Angie. Our date night was on!

Beth and I haven't gone out in a while so we decided to go to one of the more popular restaurants in Minneapolis. It is a steakhouse called, "Manny's". We had a little trouble finding it (Believe it or not there are as many one-way roads in Minneapolis as in Boston!) but we still managed to make our 6:30 reservation. Everything at "Manny's" is over-the-top from the cuisine to the portions to the service. We were seated at a huge luxurious booth that could have easily sat 6. Our waiter Scott, was attentive and helpful without being snooty. Our jaws dropped when he presented the "Visual Menu" with double Porterhouse steaks the size of pot roasts, a 10 pound live lobster and more.

The food selections we ordered were delicious - crab cakes served with a mustard mayonnaise, Caesar salads, New York Strip sirloins (their signature dish), side orders of sauteed mushrooms and hash browns with onions(another signature dish). We finished it off with the best tasting cup of coffee I have had since coming to Minnesota (Did we tell you there are no Dunkin Donuts coffee shops here in Minnesota?) and a complimentary chocolate mousse.

It was expensive but well worth it. For Beth and me it was a real treat to get out and spend some time together.

It was a wonderful night out and one that Beth and I will remember for a long time. Thank you, "Manny's". Thank you, Angie. And thank you, Amy, for allowing us to feel comfortable leaving you for a couple of hours.

Tuesday, November 19, 2002 at 12:12 PM (CST)

Day +74 Nice and Quiet

The weekend has been quiet and uneventful. Amy has been able to catch up on some well-deserved rest (Beth and I have, too). Yesterday we were at the BMT clinic to get blood drawn and to change Amy's "Port-a-Cath" dressing.

Amy's counts continue to be strong. Amy is eating and the nausea, although constant, seems less. Today we go back to follow up with the gastroenterologist who performed the upper GI endoscopy.

We feel like we are on an upswing...and enjoying the ride.

Thank you for your positive thoughts and prayers!

Saturday, November 16, 2002 at 02:31 PM (CST)

Day +71 Two procedures, Two 12 Hour Days As An Out-patient

It has been an especially grueling but ultimately positive last few days. Anyone who has had to wait with a sick loved one as an outpatient in a hospital for 12 hours will sympathize. And if you had to wait for 12 hours, two days in a row will empathize with us! Waiting can be hard, frustrating, and emotionally draining.

Sometimes, it can't be helped. But more often than not, it's an internal miscommunication that is probably to be blamed. What can you do? Do you freak out and go ballistic at the hospital staff? Do you put yourself in "passive zone" and let the chips fall where they may? Or do you draw strength and support from your family and pick your battles to reach the desired outcome? We chose the last tactic and we did ultimately achieve what we set out to do... even if it took quite a bit longer than originally anticipated.

On Thursday Amy had the endoscopy done on her upper GI. The night before Amy had complained of significant pain in her left arm running up to her shoulder. It was exactly where her PICC line was located. We checked in for outpatient surgery at 8:30 in the morning for her scheduled GI scope. The surgeon with the aid of a special camera mounted on the end of a small tube inserted it into Amy's mouth. She guided it down through her throat into her stomach and small intestine. The surgeon was hunting for anything that might look amiss. Investigating her upper gastro-intestinal tract would hopefully reveal the cause of Amy's constant nausea. In particular, she was searching for evidence of Graft versus Host Disease or an infection. After the procedure the surgeon spoke with us and gave us some preliminary findings. She explained that the biopsies would take about 24 hours to culture but she would try to get the results as quickly as she could. She also mentioned that the cell lining of Amy�s intestine had not grown back yet from the effects of the chemotherapy and the radiation. It was imperative that Amy receive liquid nourishment to stimulate the re-growth of these cells. She asked that we schedule an appointment to meet with her in her clinic.

When Amy awoke from anesthesia Beth and I noticed that her upper arm extending to her shoulder had become noticeably more red and rash-like. We asked the charge nurse what was the procedure we needed to follow to arrange for a physician to look at it. We explained given Amy�s recent occurrence of staph infection with her previous Hickman central line we were concerned. The nurse said she would ask about it but suggested I also go the BMT clinic and speak with them, too. So, I left Beth and Amy in the Phase II contact isolation recovery room around 1PM and went over to the BMT clinic. I explained the situation to Amy�s pediatric nurse practitioner. She told that me they would call ahead and make arrangements for an Interventional CV physician to see Amy as well as an ultrasound to be done on Amy�s arm and shoulder. Once those ultrasound results had been interpreted by the radiologist, an Interventional CV (Cardio-Vascular) physician would speak with us and probably remove the line. We waited in the contact isolation room for a long time. 4 hours later the ultrasound was performed. The radiologist confirmed that the PICC line was blocking Amy�s vein and not allowing blood to pass around it. They were not sure about the severity of clots and ordered a second ultrasound which re-confirmed that the line should come out immediately. We waited another hour for an Interventional CV physician to show up. He never did. Thankfully, at 6PM the head nurse of the BMT clinic met with us in the ultrasound/radiology waiting room. She heard of the mix-up and came up with an alternate plan. She brought us up to the BMT ward, 4A, (where Amy lived for 2 months).

We met with the �Fellow�, who we knew from our most recent stay. A �Fellow� is a physician who is more experienced than a �Resident� but has not yet completed the length of specialized training to become an �Attending� physician.

After the situation was explained to him and he had a chance to see the site of the redness/rash, he told us he would be happy to remove the PICC line. He was able to do it right on the ward with the help of one of the nurses (that we know) assisting him. Beth could not bear to watch as the sutures were removed and the long tube removed. Although we were told it would slide right out, it tugged at Amy�s shoulder where it was blocked in. Amy was so relieved when it was finally removed. We arrived back in the apartment around 8PM tired but grateful. Our next appointment was for 8AM tomorrow in the BMT with Dr. MacMillan and then on to outpatient surgery for Amy�s next procedure.

Morning arrived quickly on Friday. We met with Dr. MacMillan who went through everything with us. She told us that she was pushing to have the Interventional CV surgeon insert a �Port-a-Cath� instead of the temporary PICC line (which would have then been replaced the following Thursday). In that way we would spare Amy an unnecessary additional procedure next week. Also, the DNA test came back and it showed 100% engraftment - which was great news! Based on Amy�s strong blood counts, the recent DNA test, and because Amy has been through so many procedures within the last few weeks, Dr. MacMillan decided not to bother with the 60 day bone marrow biopsy.

While she was explaining all of this the phone rang twice. The first time was to confirm that the interventional CV surgeon would insert the long-term �Port-a-Cath� under the skin rather than the one-week PICC line. We were thrilled! The second call was even better. The biopsy tests came back negative for Graft versus Host Disease! Dr. MacMillan explained to Amy this was great news but it was very important she start to eat. If Amy can not get nourishment by eating they will need to insert a G-Tube and provide her with liquid nourishment. Amy upon hearing this put her hand up to Dr. MacMillan as if to say �Talk to the hand because the face is not listening�. We all had a good laugh but I am sure Amy is now motivated more than ever to eat.

We left the BMT clinic very happy and positive which in hindsight was wonderful because we were in store for another grueling 11 hours in outpatient surgery. We waited in the outpatient admission waiting room for about a half-hour. Then we were brought in to one of the special contact isolation rooms. Things seemed to be moving swiftly. Thoughts turned to what sort of plans we would make for the afternoon when we got back home. Maybe Beth would go shopping for a winter jacket while I stayed with Amy? Or maybe I would take a walk by the Mississippi river while Amy rested back in the apartment? Instead, we waited and waited and then waited some more inside the closed-off contact isolation room. None of us had eaten although Beth and I did drink large cups of coffee while we conferred with Dr. Macmillan earlier in the morning. After a few hours the coffee was acting like Drano in our empty stomachs. In all we had waited about 6 hours in the contact isolation room before the team brought Amy to the OR for the surgical procedure. It was a true test of patience.

We were grateful that the �Port-a-Cath� was getting inserted instead of a second PICC but it hadn�t played out as we had envisioned. As I had with all of her other procedures, I accompanied Amy into the surgical suite. This suite was different from the one Amy was in yesterday. There was a huge machine in the suite that looked like a cross between a large CT scan and an ultrasound. I imagine that is what the surgeon used to guide the catheter through the chest, neck, throat and heart. Once they got going the procedure took about 3 hours. Amy�s recovery from anesthesia took about another two hours. By 9 PM we were discharged and heading back to the apartment.

We were hungry, tired, exasperated, hopeful, and energized all at the same time. What a jumble of emotions. What a jumble of feelings. However, at the end of the day we were happy and grateful to be doing as well as can be expected and to be back in our new home.

Life is good!

Wednesday, November 13, 2002 at 12:15 PM (CST)

Day +68 More Procedures Planned

Amy still feels constantly nauseous and weak.

After meeting with us at clinic yesterday, Dr. MacMillan wants to have several procedures performed within the next few days: an endoscopy with biopsies; bone marrow biospy; removal of the IV PICC line and insertion of a long-term under the skin IV access port for Amy.

She wants to have an endoscopic survey of Amy's upper GI (with possible biopsies) to attempt to get at the root cause of Amy's constant nausea. If we can determine what is causing it hopefully an effective treatment plan can be implemented. She told us that many transplant patients have nausea in the mornings but tend to get better after vomiting. Very seldom is the nausea as constant as in Amy's case.

Dr. MacMillan wants Amy to have a bone marrow biopsy performed to see how the new marrow is engrafting and to ensure all of us that the transplant is developing as it should.

The last procedure is to replace Amy's PICC line with a subcutaneous port for blood draws and IV infusions. This port is placed under the skin above the chest and is accessed by syringe. Amy's PICC line has been problematic at best and needs to be replaced. The line itself still causes Amy considerable pain. Blood draws are excruciatingly slow from it. At clinic today it took an hour for the nurse to draw four small vials of blood and that was with contant finessing and flushing of the syringe, adjustment of the PICC line, and positional changes of Amy's arm. Infusion of Amy's IV fluids and her IV antibiotic are not any easier. The meds and fluids take much longer than they should to go in. Hopefully, the port will make blood draws and IV infusion much easier and less painful for Amy.

Dr. MacMillan tried to arrange for all three procedures to take place tomorrow (Thursday) but unfortunately the OR is booked too heavily to accomodate her request. Instead the Endoscopy will take place tomorrow morning. They will let us know later today or tomorrow when the other procedures can be scheduled.

Please continue to keep those positive thoughts and prayers coming.

Monday, November 11, 2002 at 09:49 AM (CST)

Day + 66 Adjusting To A New Routine

It is a difficult adjustment taking over (again) responsibility for all of Amy's oral and IV meds. In addition to the many daily scheduled meds she has quite a few that are "PRN", better known as "as needed" medicines. Beth and I now administer the IV fluids, IV antibiotic, the electronic IV pump, and appropriate flushing of the IV lines with Saline and/or Heparin as required.(A med schedule Beth and I put together has been attached to the photo section of the site today to give you a sense of what Amy has to take - it's no wonder she feels nauseated).

Amy's nausea is still a constant concern. She vomited and/or spit-up quite a few times yesterday. We try as hard as we can to not have the vomiting impact oral medications she has just taken but it is very hard. Fortunately, she is fever free but her appetitite is minimal. Last night Amy's PICC line continuously got kinked as Amy slept setting off the IV pump alarm throughout the night. Beth finally rigged the line in a kink-free way and told Amy to try to sleep in just one position. Finally, it worked but all of us are pretty tired this morning.

We go to the clinic today at 1PM. We hope we can avoid Amy having to be placed on IV nutrition (called "TPN") but her weight continues to dip. Please say a prayer for Amy's appetitite to return and for her nausea to lessen.

Saturday, November 09, 2002 at 06:54 PM (CST)

Let's try this again...

Yeah, we are back in the apartment!!! No more wakeups every two hours in the hospital, no more "chair-beds" and hopefully more sleep. We are so happy to be together again. Amy is still feeling very sick but no fever!! The Home Care Nurse just left. We are tired but happy to be here. Our nursing skills just keep getting better and better. We now know how to infuse her with antibiotics along with the constant fluids. A bit scary but with the proper instructions we are very confident we can do it. Amy watches her Mom and Dad very carefully making sure we do everything just right.

Please pray for a family here who just lost there son from transplant complications. It reminds us that life is ever so precious and can be taken from you in a moment.

We, also have some prayer requests, Amy has not eaten in about three days, and her weight continues to drop. Her nausea just will not go away. She has been a trooper(as always) and is keeping her meds down, but food is another story for her. Please pray that she can eat and soon. Her body is so weak, and needs food. If she does not, more IV meds will have to be given to her, and that means Glucose problems and more blood tests. So eat, eat, eat, Amy.

Thanks for all the prayers we need them!!!!!!!!!!!!!!

Thursday, November 07, 2002 at 09:45 PM (CST)

Day +62 Possible Discharge By Saturday?

Amy's nausea and her stomach pain continue but her fever is lower now - typically between 99 and 100 degrees. Unfortunately, Amy's bladder cystitus appears to be starting up again as evidenced by her progressively passing more blood clots.

Her left arm and shoulder which are where her new PICC intravenous line was inserted to her heart, continues to be quite sore and tender. The muscles on her right chest muscle and neck where the central line was surgically removed is becoming less stiff, sore and tender.

Amy receives morphine for the pain and Zophran for the nausea and they seem to provide short-term relief. They also make her quite drowsy. Because Amy was under contact/isolation precaution she was not allowed out of her room until yesterday. Within the past two weeks the lack of exercise, a constant fever, two surgical procedures, and two and one-half days of not being allowed to eat has left her considerably weak. Tonight she took her first walk on the ward to build back up those leg muscles.

Beth and I are pushing her to "eat her way out of the hospital" and encouraging her to exercise those tired legs of hers. Amy is trying her best to accomodate us although she feels so crappy. Beth and I see slow steady progress with Amy during the past few days. It is harder for Amy to discern this improvement as she is living with this minute-to-minute rather than using the 24 hour data points that Beth and I compare.

We all want to be back in the apartment. No one wants this more than Amy. She would love to be able to rest on her own bed and get an uninterrupted good night's sleep for once. It's been a hard two weeks on her but if she can keep her fever below 101.5 for the next two days she will be discharged on Saturday. Amy will still be considerably weak but Beth and I will be able to manage her care from there with daily visits to the BMT out-patient clinic.

We are keeping our fingers crossed and, of course, keeping positive.

Thursday, November 07, 2002 at 09:45 PM (CST)

Day +62 Possible Discharge By Saturday?

Amy's nausea and her stomach pain continue but her fever is lower now - typically between 99 and 100 degrees. Unfortunately, Amy's bladder cystitus appears to be starting up again as evidenced by her progressively passing more blood clots.

Her left arm and shoulder which are where her new PICC intravenous line was inserted to her heart, continues to be quite sore and tender. The muscles on her right chest muscle and neck where the central line was surgically removed is becoming less stiff, sore and tender.

Amy receives morphine for the pain and Zophran for the nausea and they seem to provide short-term relief. They also make her quite drowsy. Because Amy was under contact/isolation precaution she was not allowed out of her room until yesterday. Within the past two weeks the lack of exercise, a constant fever, two surgical procedures, and two and one-half days of not being allowed to eat has left her considerably weak. Tonight she took her first walk on the ward to build back up those leg muscles.

Beth and I are pushing her to "eat her way out of the hospital" and encouraging her to exercise those tired legs of hers. Amy is trying her best to accomodate us although she feels so crappy. Beth and I see slow steady progress with Amy during the past few days. It is harder for Amy to discern this improvement as she is living with this minute-to-minute rather than using the 24 hour data points that Beth and I compare.

We all want to be back in the apartment. No one wants this more than Amy. She would love to be able to sleep on her own bed and get a good night's sleep for once. It's been a hard two weeks on her but if she can keep her fever below 101.5 for the next two days she will be discharged on Saturday. Amy will still be considerably weak but Beth and I will be able to manage her care from there with daily visits to the BMT out-patient clinic.

We are keeping our fingers crossed and, of course, keeping positive.

Tuesday, November 05, 2002 at 11:07 AM (CST)

Day +60 Hurry Up and Wait

The last two days (Sunday and Monday) have been "hurry up and wait" days for Amy's Hickman central line to be removed. First we thought it would be done on Sunday and as a result Amy was not allowed to eat all day long. You are not allowed to eat solid food at least tweleve hours before surgery. Because Amy's procedure had not been scheduled well in advance, she was "on call". That meant that we did not know when they would take her but we had to act as though it could be at any time.

She still had her significant amount of medications to take except that now she had to take all of her oral meds on an empty stomach. Her nausea grew steadily worse. By Sunday at 5PM they notified Amy she would not be brought downstairs. They would try to fit her in on Monday.

So, we went through the same scenario on Monday. Poor Amy was not allowed to eat anything all day. We waited and waited and then waited some more. The OR could not give us a time. They would call us when a slot opened up. The morning passed and then the afternoon. Finally at 5PM the OR called to say they were ready for Amy.

The surgeon explained the procedure is relatively simple but would take some time to us in his own folksy way. He said, "It's kind of like making biscuits. Putting them in the oven to cook them is the easy part. It's the prep work beforehand that takes some time and the clean-up afterward." He was well intentioned but I don't think Amy appreciated the food analogy.

Five hours later (10PM Sunday) Amy was back in her hospital room. Her Hickman central line had been removed and a PICC line was inserted in her left arm (at the inside part of the elbow) with a catheter that ran to her heart. She was sore, very sore. And of course she was weakened from two days of not eating.

The good news is that her temp is now down. Amy still feels quite nauseous and has vomited overnight and today.In the past eight days she has been battling consistent fever, nausea, and pain. Hopefully, Amy has turned the corner and the cause of her fever has been removed. Beth and I are constantly amazed at her strength, perseverance, and remarkable composure through all of this.

Please keep those positive thoughts coming!

Sunday, November 03, 2002 at 10:04 AM (CST)

Day +58 Out With the Old In With the New

Amy's fever continues. Her blood cultures are continuously coming back positive for the staph infection. Her attending physician feels confident that the reason for her fevers and the staph infection are due to staph bacteria that have adhered to the plastic lumens of her Hickman central line. The strong antibiotics she's been on , Vancomycin, can not kill the bacteria that is on the inside of the plastic tubing.

The only way to get rid of the problem is to remove the central line. Once it is removed they will replace it with a temporary PICC line in her arm that will run to her heart. After a couple of weeks they will put a new Hickman line back in.

We thought it might be on Monday that they would remove the Hickman but now it looks like they will do it today. While Amy is not thrilled with yet another invasive procedure being performed on her, she knows (and Beth and I know) that if it removes her fever it will be worth it. Once her fever is gone she will be that much closer to getting discharged from the hospital and returning to the apartment.

Please keep those positive thoughts coming!

Friday, November 01, 2002 at 09:02 AM (CST)

Day +56

Amy's fever continues and she feels progressively more sick to her stomach. We try to make Amy comfortable but the hospital setting does not allow for quiet rest. She vomited several times last night. Blood cultures reveal at least two different bacteria present. While they are treating them, neither Beth nor I see any noticeable signs of improvement from the strong antibiotics. In fact, one of the bacteria present in her blood may well be a side effect from one of the meds she is on.

Later today Amy will undergo a surgical procedure. Her ENT surgeon will perform a "sinus tap", investigate the mass by her mastoid, and drain her ear. Perhaps this will make a positive and noticeable difference? We certainly hope so.

Amy's discharge from the hospital does not appear to be any time soon. Needless to say, we are discouraged and frustrated that instead of her initial fever being treated and eliminated, we feel that her condition is backsliding and getting worse.

Wednesday, October 30, 2002 at 09:17 AM (CST)

Day +54 A Scary Night

Last night Amy was having trouble speaking. In fact, she couldn't speak at all for a while. When she did speak there was a noticeable slurring coming from the right side of her face. Was it a seizure? A mini-stroke? The doctors don't seem to think so although sometimes CSA (a med Amy is on) is known to cause convulsions if amounts in the blood are elevated. They did a CSA-level blood test this morning that will take the rest of the day to run. A more likely scenario (although we don't know for sure) is that Amy's sinuses show sinusitis and that there could be fluid build-up in her ear pressing against nerves that control facial muscular movements.

When they can schedule an open slot in the surgical suite downstairs (hopefully today) they will take a closer look to check out what is going on and attempt to drain the ear. They will also perform a bone marrow biopsy on Amy at the same time, too.

Amy (and Beth and me) are a lot more concerned this morning than we were yesterday. It is very scary to be this far along and have something like this happen.

Tuesday, October 29, 2002 at 09:04 PM (CST)

Day + 53 Trick or Treat?

Amy's fever has not subsided. She is still in the hospital and at this rate it looks fairly certain she will not be discharged until after Halloween. The BMT ward was full when we were readmitted so Amy is now in the pediatric/oncology ward on the 5th Floor, Ward 5B. She is in isolation and not allowed to go out of the room. She is making every effort to eat and to drink her way out of there but her temp refuses to go down. Also the cystitus seems to be coming back. As you can imagine, she is quite depressed about this most recent setback.

The doctors are not sure if it is a viral, bacterial or fungal infection causing the fever but as she is not getting any worse they are hoping that it is viral and will go away on its own. As a preventive measure they have her on strong antibiotics and anti-fungal meds, too, just in case.

Beth, Amy, and I are aware it could be a lot worse but are just frustrated that we have spent only one week out of the hospital since Amy's admission back in August. (It's hard to believe it will be November in three days!)We so enjoyed being together in the apartment but we knew it was likely she would be readmitted.

Fortunately, the doctors and nurses (and aides) have been wonderful and caring to Amy. Your constant support has been a huge help, too! The cards, letters, and gifts sent by all of you have helped get us through these emotionally trying times more than you will ever know.

Thanks, and please continue to keep those positive thoughts coming!

Sunday, October 27, 2002 at 11:42 PM (CST)

Day +51 Back in the Hospital

It was nice while it lasted but unfortunately, Amy is back in the hospital. Today she spiked a fever and was readmitted. This time we are on the 5th floor in Ward 5A. The doctor says Amy will be in for at least three days. Poor Amy was so disappointed.

Dr. MacMillan warned us that setbacks were to be expected and to take them in stride. We hope that the antibiotics can quickly fend off this infection and we are back together in the apartment soon.

Thursday, October 24, 2002 at 08:36 AM (CDT)

Day +48

Outpatient life for us seems to be going along just fine. Amy continues to show improvement daily in small ways. We are off to clinic once again today for all her regular blood tests.

We have a special request today. We know a fourteen year old boy who is post-transplant here (Day +120) at Fairview. He, too, has Fanconi Anemia. He and his family are going through a very rough period.

As we continue through this journey we have seen firsthand how quickly Bone Marrow Transplant patients' health can deteriorate. We have seen it with Amy and we have seen it with other patients. It makes us grateful when she is doing well but also ever vigilant for the next "bump in the road".

We have no doubt that your prayers are helping us and hope that your prayers will help him, too.

Tuesday, October 22, 2002 at 11:25 PM (CDT)

Day +46 Life as a BMT Outpatient

Thank you everyone for the wonderful birthday presents you sent to Amy. Because her discharge had been postponed two days and then delayed again, her birthday was an extremely hectic day. Amy was not discharged until after 4PM on Sunday. Although we did not have a birthday cake for her this year because of her delayed discharge, opening presents at the hospital room and eventually at the apartment gave Amy much joy.

Monday was our first full day as a BMT outpatient. Amy's appointment at the BMT clinic was at 9AM. Before that Beth started the day at 6AM with an IV fluid change for Amy. At 7:30 we gave Amy her first round of oral meds. At 8 AM she was vomiting. Needless to say not a great way to start off our first day but by 9AM we were at the clinic.

Various blood tests were drawn and it turned out that Amy was low in Magnesium and was infused intravenously. By 1PM Amy had finished receiving the magnesium and returned to the apartment.

Dennis and Amy's Grandmother, Ruth, left Monday afternoon to return to Boston. It was very hard for Amy to say goodbye to them. She was quite emotional when she gave Dennis a final kiss and hug before they left for the airport.

On Tuesday we returned to the BMT clinic pretty much following the same routine as the day before. Amy, as usual, has been wonderfully patient and calm through all of this. As Amy gets stronger she will not need to go to the BMT clinic daily. She may get to go three times a week.

Beth and I are adjusting to running the IV pump for Amy and switching the bags of solution every twelve hours. We also administer approximately two dozen oral meds daily for her, too. It was a little nerve-wracking for us to make sure we were giving her the right pills at first because the discharge orders list the meds by their popular product name but the pharmacy in all but two of the instances gave us the generic equivalent without referencing its more popular product name. It is a lot to handle but it is wonderful to have the three of us together in our own place.

For right now, though, things are relatively good and we are appreciative.

We are not "out of the woods" yet. Dr. MacMillan explained that setbacks are quite common and to expect them. Almost everyone going through a BMT ends up returning to the hospital at least once after being discharged before the end of the post-BMT 100 day mark. Amy's counts while good for a BMT patient are far from normal. Amy will more than likely require a red blood cell transfusion on Wednesday and probably a platelet transfusion, too, when we are at the BMT clinic.

We have entered the third (and longest) phase of the BMT process, post-BMT outpatient follow-up. With a little luck we are half-way to the point where Amy can return to Hingham to spend the Spring and Summer rebuilding her immune system. We are doing all the right things and with the prayers and support from all of you are moving forward (even if the progress seems a bit slow).

As always, please keep those positive thoughts and prayers coming.

A special note of congratulations to my cousin, Marisa, and her husband, Alec, on the birth of their twins this past week in Boston. Beth, Amy, and I are very happy for you sending you our love and wishing you all the best!!

Sunday, October 20, 2002 at 01:43 PM (CDT)

Day +44 Snow and Go
At midnight, the night shift nurses stopped by to wish Amy a happy birthday. When we got up this morning it was snowing in Minneapolis!!!!

Dr. MacMillan has given us the "green light" for Amy to be discharged and go back to our apartment.

I went down to the pharmacy and picked up 20 prescriptions that had been filled for Amy that she will need once we get home. The nurse will be in shortly to explain scheduling of the at-home meds and how to (attempt to) keep track of everything. The home health nurse will be stopping by the apartment around 3 PM to get Amy's IV set up and instruct us how to run her fluids. Dressing changes, dozens of pills per day, IV adminstration of monitoring of fluids - it is all a bit overwhelming.

Saturday, October 19, 2002 at 01:01 PM (CDT)

Day +43 Sooooooo Close....

We are still in the hospital. Amy still isn't feeling great. Last night she began to have some intestinal problems, so they want to keep an eye on her for the next 24 hours. Of course, GVH is always on everyone's mind.

Yesterday we really cleaned out her room hoping to be discharged, but as we know things change by the minute around here.

Amy will (hopefully) be discharged sometime tomorrow, so we plan on having two parties, one here in the hospital and the other back at the apartment in the late/early evening.

Keep the prayers coming!!!!!!!!!!!!!!

Thursday, October 17, 2002 at 10:06 PM (CDT)

Day +41 Positive Signs of Improvement

Amy is very excited about her 5 1/2 year old brother, Dennis, arriving today (as are Beth and I)! It's been almost six weeks since we last saw the little guy and six weeks since he has seen Amy, Beth, and me. He is such a joy. We tried to prepare him beforehand by reminding him on the car ride to the hospital from the airport that the medicine has temporarily changed the way Amy looks. Although he seemed to understand that Amy's hair is now gone and her face has been made puffy from the medication (and that it is only temporary), it was a bit of a shock for him when he did see Amy face-to-face. For a few minutes afterward all he could do was look out the window when we spoke with him. He couldn't handle seeing his big sister looking so differently.

It was hard on Amy to see him react so strongly to her appearance and she started crying. Dennis upon hearing her crying seemed to wince (because he was still looking out the window) and slowly turned back to console his big sister. We re-explained to Dennis that Amy's hair will come back although it might come back a different color or more curly but it is going to take a little time. Her face will be less puffy very soon. They are just temporary changes to the outside of her body but the medicine doesn't change "who" she is. He understood. He's a great kid. He is a sensitive child, too. It's easy to overlook the impact of BMT's on siblings. Before long it was if they had never been separated and he was hard at work making Amy laugh non-stop and for the most part succeeding.

Amy is feeling better and it shows. She is eating more and feeling less nauseas. If this upward trend continues and we can continue to wean Amy off the IV meds and TPN, we may well be back in the apartment for her birthday on Sunday. It has been a very good day! Thank you all for your positive thoughts and prayers!!

Wednesday, October 16, 2002 at 09:15 PM (CDT)

Day +40 Things are looking up

Amy's day began with an unannounced arrival of a mobile radiologist and her assistant at 7:45 this morning to take an xray of Amy's stomach. Throughout the day Amy seems to be on the "up" she has been eating more and keeping it down. She still has pain and nausea and the doctors are doing their best to find out why. Amy will have a CT scan of her tummy, possibly on Friday.

Dr. MacMillian is on service for the next two weeks and we are thrilled. She specializes in FA and happens to be our primary physician.

Tomorrow Dennis (our 5yr old son) arrives!!!!!!!!!!!!!!!!! We can't begin to tell you how much we have missed him and cant wait to give him a big hug. He will be able to celebrate Amy's birthday on Sunday.

Keep the prayers coming they seem to be doing the job.

Tuesday, October 15, 2002 at 01:05 PM (CDT)

Day +39 More Tests

Amy's nausea continues. The doctors are not sure what is causing it. They will begin tapering her off the steroids as there has been no marked improvement with them. She will have a scan of her lower GI today.
Not sure exactly when the test will be today. If the nausea does not improve they will probably put in a feeding tube through Amy's nose. It is not exactly the bithday present she was expecting. Oh well, it's a great incentive for her to really try to eat her way past the nausea...if she can.
On a more positive note, Amy's blood counts continue to be strong WBC 6.9, ANC 6.0 Tonight our Care Partner volunteer, Angie, will be stopping by to sit with Amy while I take Beth out for a well-deserved early dinner at a nearby restaurant. We had to cancel on Angie the last few times (she offered to sit with Amy) because Amy had been feeling so poorly. We are excited to get out and be together for an hour or so.

Sunday, October 13, 2002 at 11:06 PM (CDT)

Day +37 Ups and Downs

Amy still feels lousy but Beth and I can see certain signs of incremental improvement. The nausea is still a constant but the cystitus appears to be getting better. Amy is still on IV nourishment(TPN) but has eaten some solid food yesterday and today. Her glucose levels are bouncing around and as a result she requires hourly blood draws to determine the appropriate amount of insulin to give her. Poor Amy and Beth did not get much sleep last night as the alarm on her morphine drip went off throughtout the night and early morning.

Tomorrow (Monday) she is scheduled to receive a stomach xray to look more closely at the swelling at the opening of her small intestine. We won't know what time it will be performed until Monday. For this scan she will need to take a barium-based drink to provide a contrast for imaging. She had one of these types of drinks before and is not looking forward to it on Monday. It tasted terrible. Maybe for this procedure there will be a different "smoothie" that will be more palatable. Constant nausea + terrible tasting drink = an unpleasant afternoon for Amy.

Amy's 12th birthday is on Sunday. We hope to be discharged by then but we don't know if she will be with so much still up in the air. We have received some birthday presents by mail and Amy is very excited to open them. We told her she has to wait until the 20th, though, to get them. It gives her something very positive to look forward to doing. Even if we have to spend Amy's birthday in the hospital, Beth and I will make it as festive as we can. We'll figure out something.

Please keep the positive thoughts coming!

Friday, October 11, 2002 at 07:28 PM (CDT)

Day + 35 Biopsy Test Results - Good news!

The attending physician and fellow came by a little after 5PM tonight to give us an update on yesterday morning's procedure. They had some preliminary findings. Two pathologists reviewed the biopsies from Amy's throat, stomach and intestine and both stated they could not conclusively determine that the tissue samples exhibited graft versus host disease. They are not sure exactly what it is. It is possible that it could be early stage GvHD. The culture test for Candida in the throat will not be back for a couple of days.

The doctors believe Amy's vomiting and backslide of the past few days may be a reaction to being weaned off the prednisone too quickly. She will be started back up on the steroids but at lesser dosage than if she presented with GvHD. Then she will be slowly tapered off them after a couple of weeks.

Although Amy is sore today and threw up this morning, by mid afternoon she was eating solid foods again and drinking lactose-free milk. So, all in all some good news and some good trends within the last 24 hours.

Thursday, October 10, 2002 at 11:25 PM (CDT)

Day +34 Throat, Stomach and Intestinal Biopsies

This morning Amy was wheeled down to the surgical suite on the 3rd floor to have the GI scope and possible biopsies performed. The procedure went relatively fast. We left her room around 9AM and got set up in the pre-Op room. She was taken from the pre-op room a little before 9:45 and brought to the recovery room around 10:30. We had hoped that the GI surgeon would come back afterwards to tell us that she did not find anything. Unfortunately, she told us quite a bit more than we were prepared to hear.

The surgeon claimed to have found a Candida infection in Amy's throat and what she believes to be Graft versus Host Disease (GvHD) in Amy's stomach and small intestine. She also believes there may be some malformation at the opening of the small intestine and had ordered additional tests to find out whether it is a swelling, more GvHD, an infection, or simply a congenital abnormality. She also told us that she had "nicked" a duct while performing the scope and that there will probably be some additional bleeding as a result and that we will want to keep an eye on it.

We have now officially entered the more serious stage of critical post-BMT complications. Obviously, it is something we had wished we could have spared Amy. Tomorrow we will have confirmation of the the Candida and the GvHD. Unlike the casual attitude toward the hemorrhagic cystitus, the doctors now seem very concerned about the latest findings.

Poor Amy as you can imagine was a nervous wreck leading up to having the procedure performed and now is extremely sore after having two tubes inserted down her throat (one for breathing and the other for the the upper GI scope), and having samples of tissue taken from her throat, stomach and intestine, on top of feeling crummy prior to doing all of this.

The news is bad. How bad this latest "bad" news is... is yet to be determined. GvHD is quite common among unrelated bone marrow transplants. It is the level of severity that is variable. Hopefully, we can keep the Candida infection in check, minimize the impact of the GvHD, while not suppressing Amy's immune sytem to the point where an opportunistic infection can cause a life-threatening infection.

Please keep those positive thoughts and prayers coming.

Wednesday, October 09, 2002 at 11:43 AM (CDT)

Day +33

The past 24 hours have been tough on Amy physically and emotionally. She continues on the IV Nutrition and still does not want to eat anything in fear of throwing up.

The doctors are concerned and Amy will have to undergo an "upper" GI Scope tomorrow morning. They will be looking for any signs of GVHD. Please say extra prayers for Amy to get through this next procedure, and hey do you mind saying some extra prayers for us too???

Amy's counts have fallen, but we are told this happens and again they are keeping a close eye on them. Her WBC is 3.1(5.1 yesterday) and her ANC 2.6.

Thank you everyone for all the support!!

Tuesday, October 08, 2002 at 08:48 AM (CDT)

Day +32 A New Approach

In the past 3 days she has slept considerably and thrown up whenever food was put in her mouth. She probably still needs to catch up on the rest she lacked from a few days ago but her recent lethargy has been a little bit alarming. Her stomach distress continues, too. Amy vomited again yesterday in the morning, afternoon, and evening.

Last night she was put back on IV nutrition (to help with the stomach distress) and administered IVIg to hopefully promote a stronger immune response against the BK virus. She was also given additional stomach anti-acid meds. Hopefully, it will make a difference regarding the cystitus and the gastric distress. We are optimistic that it will.

Amy's blood counts look good - Amy's WBC is 5100, ANC is 4600. Hopefully she will stop shedding platelets at such a fast rate once her cystitus gets under control.

Sunday, October 06, 2002 at 09:33 AM (CDT)

Day +30 Good News and Bad News

The good news is that the VNTR test results came back (finally - still not sure what the delay was) and Amy's marrow is 100% donor cells. Her counts have drifted a little bit lower but are still relatively strong. Today's White Blood Cell count (WBC) is 3400 and her Absolute Neutrophil count (ANC) is 2700.

The bad news is that the test results came back on the culture that was done re Amy's hemorrhagic cystitus. Amy's blood test came back positive for the BK virus. They ran a follow up test to see if her immune system has developed an antibody to it.

The problem is that Amy is on immune suppressive drugs right now to reduce the risk of graft versus host disease and graft rejection. So as a result it is very difficult for her body to fight off viruses like these. Like everything else that is going on with her, it is a medical balancing act of trying to maintain certain "therapeutic" levels of medicines, safe levels of her blood pressure, glucose levels, electrolytes, nutrition and tranfusion levels for platelets and red blood cells which se is receiving every other day now. We should know soon if she has developed an antibody, if not they will give her gamma globulin.

She has not been able to keep any food down (whether it's from the meds, the transfusions of RBC and platelets which are about every two days now, the virus, or something new - who knows?) although she has been hungry and does try to eat. She threw up last night and again this morning at 8:30. Although she is a slave to the bathroom during the day because of the cystitus, at least she has been able to sleep for the past two nights and get some rest.

We have been in the hospital for 37 days now. We are tired. We would like to be able to get Amy to the point medically where she can be discharged on an out-patient basis for daily clinic visits. We would like to be living more like a family. It's been a grind but we know that at best we are only 1/3 of the way through this.

We are grateful to all of you for your constant support and encouragement. It makes the long days more bearable.

Sunday, October 06, 2002 at 09:33 AM (CDT)

Day +30 Good News and Bad News

The good news is that the VNTR test results came back (finally - still not sure what the delay was) and Amy's marrow is 100% donor cells. Her counts have drifted a little bit lower but are still relatively strong. Today's White Blood Cell count (WBC) is 3400 and her Absolute Neutrophil count (ANC) is 2700.

The bad news is that the test results came back on the culture that was done re Amy's hemorrhagic cystitus. Amy blood test came back positive for the BK virus. They ran a follow up test to see if her immune system has developed an antibody to it.

The problem is that Amy is on immune suppressive drugs right now to reduce the risk of graft versus host disease and graft rejection. So as a result it is very difficult for her body to fight off viruses like these. Like everything else that is going on with her, it is a medical balancing act of trying to maintain certain "therapeutic" levels of medicines, safe levels of her blood pressure, glucose levels, electrolytes, nutrition and tranfusion levels for platelets and red blood cells which se is receiving every other day now. We should know soon if she has developed an antibody, if not they will give her gamma globulin.

She has not been able to keep any food down (whether it's from the meds, the transfusions of RBC and platelets which are about every two days now, the virus, or something new - who knows?) although she has been hungry and does try to eat. She threw up last night and again this morning at 8:30. Although she is a slave to the bathroom during the day because of the cystitus, at least she has been able to sleep for the past two nights and get some rest.

We have been in the hospital for 37 days now. We are tired. We would like to be able to get Amy to the point medically where she can be discharged on an out-patient basis for daily clinic visits. We would like to be living more like a family. It's been a grind but we know that at best we are only 1/3 of the way through this.

We are grateful to all of you for your constant support and encouragement. It makes the long days more bearable.

Sunday, October 06, 2002 at 09:33 AM (CDT)

Day +30 Good News and Bad News

The good news is that the VNTR test results came back (finally - still not sure what the delay was) and Amy's marrow is 100% donor cells. Her counts have drifted a little bit lower but are still relatively strong. Today's White Blood Cell count (WBC) is 3400 and her Absolute Neutrophil count (ANC) is 2700.

The bad news is that they test results came back on the culture that was done re Amy's hemorrhagic cystitus. Amy blood test came back positive for the BK virus. They ran a follow up test to see if her immune system has developed an antibody to it.

The problem is that Amy is on immune suppressive drugs right now to reduce the risk of graft versus host disease and graft rejection. So as a result it is very difficult for her body to fight off viruses like these. Like everything else that is going on with her, it is a medical balancing act of trying to maintain certain "therapeutic" levels of medicines, safe levels of her blood pressure, glucose levels, electrolytes, nutrition and tranfusion levels for platelets and red blood cells. We should know soon if she has developed an antibody, if not they will give her gamma globulin.

She has not been able to keep any food down (whether it's from the meds, the transfusions of RBC and platelets which are about every two days now, the virus, or something new - who knows?) although she has been hungry and does try to eat. She threw up last night and again this morning at 8:30. Although she is a slave to the bathroom during the day because of the cystitus, at least she has been able to sleep for the past two nights and get some rest.

We have been in the hospital for 37 days now. We are tired. We would like to be able to get Amy to the point medically where she can be discharged on an out-patient basis for daily clinic visits. We would like to be living more like a family. It's been a grind but we know that at best we are only 1/3 of the way through this.

We are grateful to all of you for your constant support and encouragement. It makes the long days more bearable.

Thursday, October 03, 2002 at 03:19 PM (CDT)

Day +27 Wait and See

Amy is about the same. The doctors still feel it simply has to run its course. It is the same drill as far as frequency and urgency of Amy having to go to the bathroom. We had thought there might have been talk of a possible discharge by the weekend when we thought everything was under control. Instead, we are hunkering down and hoping for a significant improvement with Amy's cystitus.

We still have not gotten Amy's VNTR results back yet. Not sure what the delay could be. The VNTR will tell us what portion of her new blood cells are donor v. Amy's old marrow. We are hoping for it to fall somewhere between 90% - 100%. The culture tests have come back negative for bacterial infection which is good, I guess. Although we are still at a loss to know what caused the fever.

It is a "wait and see" kind of day.

Amy's counts: White Blood Cells (WBC) 3900
Absolute Neutrohil Count (ANC) 2900

Her red blood cell and platelets are transfused on a regular basis to keep them within parameters. Typically, she requires a transusion of red blood cells and platelets about every four days. As they are not being produced in sufficent quantity by her I haven't bothered listing them.

Wednesday, October 02, 2002 at 01:48 PM (CDT)

Day +26 Fever

Amy is about the same. They have increased her Morphine to provide more relief to her. She also had an Ultrasound done yesterday afternoon. Amy rested in the evening watching some TV and feeling about the same. At 4:00am when they do her blood tests, vitals etc... she had spiked a fever of 101.7 and was given some Tylenol and put back on Antibiotics. She has been fever free since and hopefully the antibiotics are doing the job. So we just continue to wait and hope she gets better soon.

We want to thank Dennis' teacher for continuing to send us pictures of his class. Its so hard not being there to watch him, that the pictures are soooooo nice to see!!!

Thank you also for each and every guest book entry, cards and packages. Amy loves reading the entries and getting mail. Most important thank you everyone for remembering Amy in your prayers, I dont think we would have made it this far without the help!!!

God Bless

Monday, September 30, 2002 at 11:58 AM (CDT)

Day +24 More of the Same (cont'd)

For Amy, the frequency and urgency to pee continued throughout the day and night at approximately 25 minute intervals with visits in the bathroom enduring 15 minutes or longer. The morphine drip helped take the edge off the pain but not the strain. The two meds she was put on have not yet seemed to make a discernable difference with frequency/urgency/or blood in the urine. We'll see.

At 12:15 AM she vomited. A lot. Finally sometime after 1:30 AM in the morning, Amy fell asleep for a couple of hours and woke up just before her 4 AM blood draws and "vitals". She rested in bed for another hour but by 5:30 AM we were back on that "frequency/urgency to pee treadmill" for the next 4 hours. Finally around 10 AM (after her morning meds) she fell back asleep. Right now it's about noon and Amy is still sleeping peacefully. The poor kid has such a sleep deficit whatever naps she can accumulate along the way can only help her - not to mention give her bladder a rest!

When she wakes up we will see if the level of pain has subsided and get a better sense if she is getting better, getting worse, or hit a plateau. The doctors don't seemed concerned and feel that it is one of the likely complications to expect. Perhaps had they seen her in agony as I had yesterday, they would be a little less nonchalant. Maybe I'm just sleep deprived and over sensitive and being an over-protective father? It could be. But I do wonder what the percentage is of FA patients currently undergoing an unrelated BMT that end up with Cystitus post-BMT? I am willing to bet it is pretty high.

I am willing to bet that other parents (post-BMT) have sensed the same frustration as I am experiencing now, feeling powerless to spare their child this additional pain.

I apologize for this less than upbeat entry today. I am just really tired and need some sleep. Tomorrow will be a better day. I am sure of it. Please keep your positive thoughts coming.

Sunday, September 29, 2002 at 02:58 PM (CDT)

Day +23 More of the Same

The pain from the strain on the bladder continues. She continues to void blood. The routine continues of us getting up every 25 to 45 minutes to pee 24 hours a day. Amy is on 3 different meds right now to treat it. They performed a culture test on her urine and it came back positive. She is on an antibiotic to treat it but it is expected to continue for several weeks. Apparently, this is not uncommon for BMT patients to develop this hemorrhagic cystitis. While it is very painful it is not considered a life-threatening event.

(1 hour later)
I had to take a break from writing this journal because Amy was in excruciating pain. We called for the nurse and in turn the doctor was called. Amy was in the bathroom and literally in tearful agony. She was curled up and crying in pain. They arranged to give her two shots of morphine and will place her back on a continuous morphine drip. When asked on a scale of 0-10 (10 being the the most painful) how she would rate the pain, she said "9". And this is from a kid who has a very high pain threshold.

Amy has asked me to ask those of you who are on prayer lines, prayer chains, and those of you who simply pray individually, to pray for a speedy recovery of her bladder (hemorrhagic cystitis). Between the agonizing urinating and the lack of sleep the poor thing is really out of sorts. Please send your positive thoughts her way to help ease the pain.

Sunday, September 29, 2002 at 02:58 PM (CDT)

Day +23 More of the Same

The pain from the strain on the bladder continues. She continues to void blood. The routine continues of having to get up every 25 to 45 minutes to pee. Amy is on 3 different meds right now to treat it. They performed a culture test on her urine and it came back positive. She is on an antibiotic to treat it but it is expected to continue for several weeks. Apparently, this is not uncommon for BMT patients to devleop these. While it is very painful it is not considered a life-threatening event.

(1 hour later)
I had to take a break from writing this journal because Amy was in excruciating pain. We called for the nurse and in turn the doctor was called. Amy was in the bathroom and literally in tearful agony. They arranged to give her two shots of morphine and will place her back on a continuous morphine drip. When asked on a scale of 0-10 (10 being the the most painful) how she would rate the pain, she said "9". And this is from a kid who has a very high pain threshold.

Amy has asked me to ask those of you who are on prayer lines, prayer chains, and those of you who simply pray individually, to pray for a speedy recovery of her bladder (hemorrhagic cystitis). Between the agonizing urinating and the lack of sleep the poor thing is really out of sorts. Please send your positive thoughts her way to help ease the pain.

Friday, September 27, 2002 at 03:07 PM (CDT)

Day +21 Another Bump in the Road & Some Good News

Last night Amy had a rash on her neck and she was voiding blood. The doctors aren't sure but they believe she may have a bladder infection. It is very painful for her and requires her to go to the bathroom several times an hour. Needless to say, it's very hard for her to get any rest.

Upon closer analysis, the team of doctors do not believe the rash is symptomatic of Chicken Pox, HSV, or any other dangerous viral illness. We will watch it closely and hope that like most rashes, it will go away on its own. Amy's bladder will take several days to heal at best. At worst it may underlie a more serious problem. We will just have to wait it out.

This afternoon Amy took our advice and we cut her remaining hair and shaved her head. Odd though it may seem to say, she looks much better with it all off. The remaining hair was starting to look very straggly and limp. We never realized it before, but she has a beautifully shaped head.

Yesterday, Amy had her 3 week bone marrow biopsy performed. The procedure went smoothly. There were several tests done. We should know within 24 hours most of them except the VNTR test which we will know by Monday or Tueday of next week.

5 minutes ago Dr. O'Brien came in with preliminary results from the bone marrow biopsy. Amy's bone marrow at week 3 is 40% cellular which is very good. Her new bone marrow is not only producing white blood cells but is also now producing baby red blood cells and platelets. It will take quite awhile for the red blood cells and platelets to develop enough so that they appear in a complete blood count but that is excellent news. The VNTR test which will tell us the proportion of new donor marrow cells vs old marrow cells will not be in until Monday or Tuesday of next week. All in all some good news that we will embrace while Amy gets through this issue with voiding blood.

Wednesday, September 25, 2002 at 01:37 AM (CDT)

Tomorrow on Thursday Amy will have a bone marrow biopsy performed. It is the planned 3 week biopsy to measure marrow cellularity, level of engraftment, and % of donor cells. It will take place @ 1PM. She is not looking forward to it.

Amy's counts continue to be strong with a White Blood Cell count of 3900. In the past two days she has been transfused with red blood cells and platelets. She seems to go about a week between transfusions for each cell line.

She continues to be uncomfortable but she is also being pushed to convert from IV meds to liquid and/or pill forms of the same meds to prepare her for possible discharge as early as a week from today. Her throat is still considerably sore. Even though the sores have started to heal the process has been slow and her inside cheeks are still quite raw. It hurts for her to swallow pills. She takes a "bump" of the morphine to try to numb the pain of swallowing. She is not a happy camper.

Beth and I hope the throat heals fast. Considering the amount of meds she is on I anticipate her having to take upwards of 20 to 30 pills per day once we get back to the apartment. She may still have to receive her nutrition by IV. And of course we will have the daily visits to the clinic. On top of that we will be responsible for cleaning her dressing at the site of her central line and keeping the apartment as "germ-free", "virus-free" and "fungus-free" as possible. In certain respects we don't want to leave the hospital setting in that it was the nurses responsibility for ensuring the meds were given in the proper amounts and the dressings were changed. It seems a little overwhelming right now but I am sure we will adjust.

Tuesday, September 24, 2002 at 03:32 PM (CDT)

Day +18 Typical Complications?

It is 7:15 Tuesday night. Amy vomited about two hours ago. Amy does not feel well. It has been a trying day for her (and us). After hourly blood draws last night to check her glucose levels and varying the amounts of insulin each time accompanied by going to the bathroom on what seemed each half-hour, morning finally arrived without the benefit of much sleep. Although she was tired she felt reasonably well in the morning. Then around 10:30 Amy's nurse came in to say her potassium levels were high and they were concerned. They wanted to monitor her heart rate for several hours and give her some meds immediately to reduce the potassium in her body. Apparently high levels of potassium can cause erratic heartbeats and can lead to other serious complications.

I spoke with Amy's nurse and the resident to explain to both of them that since the last blood draw Amy had voided about 800 milliliters (almost a quart). Perhaps her potassium level had come down given that she had peed so much? They put the electric leads on Amy while they did another blood draw. They held off on giving her the potassium removing meds until they got the bloodwork back. It turned out that her potassium level did come down on its own to a safe level. The electrical leads were removed from her chest and they didn't give her the meds. While it is true that nothing was medically administered to Amy, emotionally she was very upset by the whole episode of putting the leads on and talk of an erratic heart beat. It took a long time for her to calm down afterwards.

Monday, September 23, 2002 at 06:28 PM (CDT)

Day +17 Side Effects

The side effects of the chemo, radiation, and immunosuppressive drugs are taking their toll on poor Amy. She still can not eat solid foods - her mouth sores hurt too much and have ruined her taste buds. Everything tastes awful to her. The lactose-free milk she has been drinking for the last two days is as much as she can manage. And even that still gives her severe stomach distress.

One of the other immunosuppressive drugs she takes is Cyclosporin (CSA), which she will have to be on for at least 6 to 9 more months. A couple of days ago, Amy's hands began trembling uncontrollably. It hasn't stopped. Sometimes other parts of her body shiver, too. (It is a side effect from this drug, CSA.) It will go away gradually once she is off the drug but that won't be for at least another 6 to 9 months.

The Methylprednisone Amy is on to also help suppress her immune system has made her face swell up around her cheeks and jowls. It will go away gradually once she is off the steroidal medication but it doesn't make having to deal with it (everyday)right now any easier.

And of course there is the substantial and progressive thinning of her once thick, beautiful, blonde hair. That too, is only temporary and will eventually all grow back but it will have to all fall out first. As she brushes what's remaining of her hair while looking in the bathroom mirror she reassures herself by saying, "It will be all right".

All these changes are a lot for Amy to have to shoulder. Not to mention the daily pressure of wondering how her newly donated marrow engraftment is doing. I know all of this bothers her but she doesn't bitch and moan about it. I wish she would complain to Beth and me. She needs to get these feeings out. Amy has to contend with all of these upsetting things right now in addition to the realization that she knows they will not go away for awhile, too. Amy still has a long way to go. It's a heavy load.

Thankfully, Amy's counts (ANC & WBC) continue to be strong. On or about Day +21 Amy will have another bone marrow biopsy performed. The BMT surgeons will be looking to see the level of marrow cellularity, the percentage of new donor cells vs old marrow, and the level of engraftment. It is the next milestone for us. For now, the doctors reaasure us everything is going according to plan.

Saturday, September 21, 2002 at 03:04 PM (CDT)

Day +15 Once Around the Block

Last night around 8PM Amy felt well enough to venture out of her room and take a stroll through the BMT ward. She did a great job. Her mom, Beth, pushed the IV stand with all its meds alongside Amy as she walked all the way down the hall on her own. I took several pictures to commemorate the event.

This morning Amy's counts continue to be strong: White Blood Cell count (WBC) 7400 and Absolute Neutrophil count (ANC) 6800

Amy doesn't complain about it but her mouth sores are still pretty tough looking. Her rash comes and goes and her digestive tract is giving her some trouble, too. But all of these things are part of the transplant experience and are to be expected. All things considered...it's a good day.

Saturday, September 21, 2002 at 03:04 PM (CDT)

Day +15 Once Around the Block

Last night aound 8PM Amy felt well enough to venture out of her room and take a stroll through the BMT ward. She did a great job. Her mom, Beth, pushed the IV stand with all its meds alongside Amy as she walked all the way down the hall on her own. I took several pictures to commemorate the event.

This morning Amy's counts continue to be strong: White Blood Cell count (WBC) 7400 and Absolute Neutrophil count (ANC) 6800

Amy doesn't complain about it but her mouth sores are still pretty tough looking. Her rash comes and goes and her digestive tract is giving her some trouble, too. But all of these things are part of the transplant experience and are to be expected. All things considered...it's a good day.

Friday, September 20, 2002 at 12:09 PM (CDT)

Day +14 No Walk on the Ward but Blood Counts Are Good

It turned out that Amy was not up for the walk last night. We considered it several times - at 7, 10, 12 and even 4:30 early Friday morning however "the spirit was willing but the flesh was weak". So later tonight we will give it a go.

Amy's White Blood Cell and Absolute Neutrophil Counts remain strong at 5.9 and 5.5 respectively. This is even higher than we had hoped. Dr. Wagner did caution us that they could dip a little more but overall everything is going well and according to plan.

For Amy's classmates who log on you should know that Amy's hospital teacher comes by everyday to follow up on her. Because Amy is starting to feel better her schoolwork is beginning. Her teacher is very nice but yesterday she gave Amy a Math test. So, even when you're in the hospital and having a bone marrow transplant there is still studying, tests and even that dreaded "H" word...homework!

Thursday, September 19, 2002 at 01:49 PM (CDT)

Day +13 Maybe a stroll through the ward tonight?

Amy's mouth sores are beginning to heal and she is less itchy. As the sores begin to heal they are tender, bleeding, and her lips are cracking but overall Amy is doing better today. Either I am annoying her less or she is feeling better. I am betting on the latter.

We are still on the lookout for acute GVHD which I will explain later on in this entry.

Her WBC and ANC counts continue to improve, 8500 and 8300 respectively. We are thrilled with the strength of the engraftment so far. Bear in mind the counts are still artificially high from yesterday's final dosage of G-CSF. In terms of what Amy's new marrow can produce on her own, tomorrow we will get more accurate White Blood Cell and Absolute Neutrophil Counts. Nevertheless (Amy hates when I use that word), Dr. Wagner is pleased with Amy's progress. He told Amy that tonight she could go for a walk around the ward. She will have to wear a protective mask, of course, when we go for our stroll. This will be the first time in three weeks that she will have been able to leave her room to take a walk. The exercise will do her good. It's great news.

Some of you have asked about Graft Versus Host Disease. Those of you interested in a layman's medical description of it please read on. Those of you who simply are checking in to see how Amy is doing from day to day, this may not be of interest to you, as it is lengthy, fairly medical and we will not be specifically referencing Amy's status regarding GVHD yet. So for some of you, we look forward to having you come back tomorrow. For the others who are more interested in the medical stuff, read on...

Definition
Graft-vs.-host disease is an immune attack on the recipient by cells from a donor. Once the BMT has taken place the three largest dangers are GVHD, Graft Failure, and Infections.

Description
The main problem with transplanting organs and tissues is that the recipient host does not recognize the new tissue as its own. Instead, it attacks it as foreign in the same way it attacks germs, to destroy it.

If immunogenic cells from the donor are transplanted along with the organ or tissue, they will attack the host, causing graft vs. host disease.

The only transplanted tissues that house enough immune cells to cause graft vs. host disease are the blood and the bone marrow. Blood transfusions are used every day in hospitals for many reasons. Bone marrow transplants are used to replace blood forming cells and immune cells. This is necessary for patients whose radiation and chemotherapy treatment has destroyed their own bone marrow. Because bone marrow cells are among the most sensitive to radiation and chemotherapy, it often must be destroyed along with the cancer. This is true primarily of leukemias, but some other cancers have also been treated this way. In the case of aplastic anemias,the radiation and chemotherapy are used to remove the old diseased marrow to make room for the new donor marrow.

Causes & symptoms
Even if the donor and recipient are well matched (HLA typing), graft-vs.-host disease can still occur. There are many different elements involved in generating immune reactions, and each person is different, unless they are identical twins. Testing can often find donors who match all the major elements, but there are many minor ones that will always be different. How good a match is found also depends upon the urgency of the need and some good luck.

Blood transfusion graft-vs.-host disease affects mostly the blood. Blood cells perform three functions: carrying oxygen, fighting infections, and clotting. All of these cell types are decreased in a transfusion graft-vs.-host reaction, leading to anemia (lack of red blood cells in the blood), a decrease in resistance to infections, and an increase in bleeding. The reaction occurs between 4-30 days after the transfusion.

The tissues most affected by bone marrow graft-vs.-host disease are the skin, the liver, and the intestines. One form or the other occurs in close to half of the patients who receive bone marrow transplants.

Bone marrow graft-vs.-host disease comes in an acute and a chronic form. The acute form appears within two months of the transplant; the chronic form usually appears within three months. The acute disease produces a skin rash, liver abnormalities, and diarrhea that can be bloody. The skin rash is primarily a patchy thickening of the skin. Chronic disease can produce a similar skin rash, a tightening or an inflammation of the skin, lesions in the mouth, drying of the eyes and mouth, hair loss, liver damage, lung damage, and indigestion. The symptoms are similar to an autoimmune disease called scleroderma.

Both forms of graft-vs.-host disease bring with them an increased risk of infections, either because of the process itself or its treatment with cortisone-like drugs and immunosuppressives. Patients can die of liver failure, infection, or other severe disturbances of their system.

Treatment
Both the acute and the chronic disease are treated with cortisone-like drugs, immunosuppressive agents like cyclosporine, or with antibiotics and immune chemicals from donated blood (gamma globulin). Infection with one particular virus, called cytomegalovirus (CMV) is so likely a complication that some experts recommend treating it ahead of time.

Prognosis
Children with acute leukemias and aplastic anemias have greatly benefited from the treatment made possible by bone marrow transplantation. Survival rates have climbed by 15-50%. It is an interesting observation that patients who develop graft-vs.-host disease are less likely to have a recurrence of the leukemia that was being treated. This phenomenon is called graft-vs.-leukemia.

Bone marrow transplant patients who do not have a graft-vs.-host reaction gradually return to normal immune function in a year. A graft-vs.-host reaction may prolong the diminished immune capacity indefinitely, requiring supplemental treatment with immunoglobulins (gamma globulin).

Somehow the grafted cells develop a tolerance to their new home after 6-12 months, and the medications can be gradually withdrawn. Graft-vs.-host disease is not the only complication of blood transfusion or bone marrow transplantation. Host-vs.-graft or rejection is also common and may require a repeat transplant with another donor organ. Infections are a constant threat in bone marrow transplant because of the disease being treated, the prior radiation or chemotherapy and the medications used to treat the transplant.

Prevention
For recipients of blood transfusions who are especially likely to have graft-vs.-host reactions, the red blood cells can safely be irradiated (using x rays) to kill all the immune cells. The red blood cells are less sensitive to radiation and are not harmed by this treatment.

Wednesday, September 18, 2002 at 12:32 PM (CDT)

Day +12 Onward and Upward

Yesterday was a tough day for Amy but today seems a bit better. Of course, it was still eventful. In the morning she had another nosebleed. She will be receiving more platelets later today. Her blood pressure was high, too, and needed medication to bring it down which involved squirting it in her mouth. It stung but it worked.

Her blood counts (just WBC and ANC) continue to rise. WBC is at 6300 and ANC is at 6000. She will be tapered off the G-CSF today. Tomorrow we expect the ANC and WBC counts to dip as they will not be "turbocharged" by the G-CSF but it will give us an indication of what her new marrow can generate on its own. Her rash seems to be less pronounced today - you can hardly see it on her arms and legs and does not seem to itch.

So let's keep our fingers crossed and hope for a better day today.

Today, another FA patient, Alex Eddy, was discharged from the BMT ward. He and his mom have been very nice and helpful to us. We wish them well and look forward to seeing them maybe at the BMT clinic. Interestingly, while Alex was in the process of being discharged another FA (Fanconi Anemia) patient, Christine Bray, (who will be 10 later this month) was admitted and will be staying right next door to us. It's very reassuring to Beth, Amy and me that Fairview's BMT staff has the level of experience it does with treating FA bone marrow transplants.

Tuesday, September 17, 2002 at 04:15 PM (CDT)

Day +11 Good News But a Bump In the Road

Amy is quite irritable today and not herself. She becomes easily upset at anything said or done near her. I have tried to comfort her but have ended up annoying her more (and for the record, this is Mike, Amy's annoying Dad, writing this entry).

The good news is that her WBC (White Blood Cell Count) has risen to 2600 from 900 yesterday. Her ANC (Absolute Neutrophil Count) has risen to 2400 from 700 24 hours earlier. When it has exceeded 2500 two days in a row she will be taken off the G-CSF medicine which "turbocharges" her bone marrow. She is engrafting rapidly and strongly. We are thrilled.

The bad news is that she has become more itchy and has red , sunburn-like areas on parts of her skin. It could be a reaction to the drugs she is on or it could be GVHD (Graft versus Host Disease). We don't know for sure what it is yet. If it is GVHD we need to treat it appropriately and hopefully minimize its severity. So for tonight we will apply creams and occasional cold packs to relieve the pain and soothe the itch. Around 11 PM the doctors will take a look at it again and see if it has gotten worse or not. If the rash has become more pronounced, they will move forward to determine if it is GVHD and treat it accordingly.

Monday, September 16, 2002 at 01:06 PM (CDT)

Day +10

Yesterday afternoon Amy had a pretty bad nosebleed. It was upsetting to her (and us). After about an hour or so it did finally stop and she could rest. Later around 10PM she was very nauseus after some meds were given to her. She threw up quite a bit of blood but I'm sure most of it was from the nosebleed she had a few hours earlier.

Amy is learning to enjoy the mouthcare more and more. It seems to be the one thing that gives her comfort with the mouth sores which are pretty bad right now.

This morning we had some good news. The two markers we are checking to see if the new marrow is engrafting are: Amy's White Blood Cell (WBC) count and a subset of that called her Absolute Neutrophil Count (ANC). Her bloodwork from this morning showed her WBC had risen from 300 yesterday to 900 today and her ANC is at 700. The neutrophils are WBC's that help fight off infections. We still have a long way to go but we are looking forward to tomorrow to see a consistent gain in the WBC and ANC.

The trend is looking good.

Keep the positive thoughts coming!

Sunday, September 15, 2002 at 02:30 PM (CDT)

Day +9

Amy had bouts of nausea last night and her mouth is still becoming more raw. The dead cells within the lining of her gut and mucous membranes are now sloughing off due to the chemo and radiation. She places ice packs on her cheeks to try to get some relief. And of course, the hair loss caused by the radiation and chemo continues, too. It is hard to watch her have to go through all of this but in typical Amy form, she does not complain. She doesn't even complain about the pain to the doctors and nurses although they can see the severity of her mouth sores and know about her numerous bouts of nausea. We tell her that she needn't be so brave, that it is okay to take pain medication. We will do everything we can to make her as comfortable as possible. She is one tough cookie.

Yesterday, we had a nice surprise when Amy received a package from the Minnesota Wild NHL team. The dad of a good friend of Amy's knows the Wild's Director of Public Relations, Marlene Wall. He told Marlene about Amy and that Amy was having her BMT in Minnesota. Marlene was kind enough to send Amy pennants, a poster, a team picture and an offcial NHL hockey puck. Amy quickly had me decorate her hospital room's walls with the Wild's pennant's and posters and memorabilia. She also invited Beth and me to attend a game as their guests. If Amy is doing well we may have her Care Partner, Angie, babysit her while we take Marlene up on her generous offer. We'd love to see them play the Bruins. They play them on October 11. We'll see.

The good news medically (and we will take whatever we can at this point) is that Amy's white blood cell count has climbed over the last few days. Since prior to the transplant it had dropped from 200 to 100 on Friday. It rose to 200 on Saturday and 300 on today, Sunday Day +9. That's two consecutive increases over the past two days. We would like to get her WBC up to about 2500 for at least 3 days in a row before we can really celebrate...but it is a good start. And we will still have a long way to go before the red blood cells, platelets, and her immune system build themselves back up. So, while I don't want to jinx it by speaking too soon, it looks like the new marrow may be starting to engraft. Let's hope for another 100 point increase in the WBC tomorrow.

Saturday, September 14, 2002 at 01:50 PM (CDT)

Day +8 The Waiting Begins

Amy's mouth is still very sore and she has stopped eating. It's just too painful for her to put anything in her mouth. She continues to be on nutrition through her IV. The nights seem to be getting a bit better with less interruptions which allows Amy to get some sleep.

Dr. Wagner is now on "rounds" for the next two weeks. He said Amy is still on schedule and doing great. He did mention that the next 2-3 days will be the hardest/painful until her white count comes in. So everyone I want you to begin praying for "engraftment" and fast!!! Once Amy begins to engraft her pain will get better, and her body can begin to heal itself. Thank you.

Hugs to everyone

Friday, September 13, 2002 at 04:00 PM (CDT)

Amy's mouth sores are getting progressively worse and more numerous. She is understandably upset about how the chemo and radiation are affecting her hair. The good news is that she is tolerating her mouth care better and in some ways even looking forward to the relief it is now giving her. The trick is to make sure the nausea is under control prior to the mouth care. She is being very good about letting us know how she is feeling.

Amy is not talking much today. It's not easy for her to be going through so much and dealing with so many changes. We try to anticipate what she will need and have it ready for her. We try to comfort her as much as we can. Hopefully, tomorrow will be a better day.

Thursday, September 12, 2002 at 09:53 PM (CDT)

Still +5 (Update)

Amy is doing ok this evening. Mom and Dad got to go out to dinner while our Care Partner Volunteer Angie stayed with Amy and watched a movie. We had a nice time getting out of the hospital. Thanks Angie!!!

Although Amy is feeling ok (the morphine seems to be working) it has been really hard dealing with her hairloss. Most of you who know Amy, her hair was sooooo beautiful and she loved it. We know it doesnt hurt to have it fall out, but it is still very hard on all of us to watch this happen. I have put it in a ponytail for the evening hoping maybe it will fall out slowly this way. (I know sounds stupid, but Amy agreed with me). I wish there was something I could do to make it easier on her.

Her night nurse Dana brought her some videos from home and Amy is happy now watching one of them. The nurses here are so nice and really enjoy making the kids feel comfortable.

Thanks to each and everyone for all the cards, gifts and journal entries, it really means so much to all of us!!

God bless you all

Thursday, September 12, 2002 at 10:06 AM (CDT)

Day +5

Amy was throwing up last night and was very uncomfortable. Her throat has become very sore and it is becoming difficult for her to speak because she has lost her voice. She writes notes to us to let us know what she wants and how she is feeling. Amy's sores from the chemo and radiation in her mouth are becoming more pronounced and tender but she is dealing with it. The scheduled mouth care is inconvenient and uncomfortable but she knows it is necessary. She has been placed on IV nutrition but still is tring to eat what she can. This morning her headache and high blood pressure were gone. The attending physician and her team of doctors just finished making their rounds and assure us that everything is going according to plan.

We get so wrapped up in the day-to-day events here in the bone marrow transplant ward sometimes it is easy to overlook that there there is life and activity going on beyond these four walls. We watched on TV the September 11th commemorative shows. It is hard to believe that the events of 9/11 (that forever changed all of our lives) took place one year ago. While the acts of the terrorists are reprehensible, the spirit of people joining together to support one another in the aftermath through such trying times is very inspirational and hopeful.

Wednesday, September 11, 2002 at 01:39 PM (CDT)

Day +4

Poor Amy has had headaches again today accompanied by high blood pressure. The doctors have just given her medication by IV to bring the blood pressure down. They believe the headaches will be lessened as the blood pressure goes back down. We hope that is all it is.

She will be set up on a self-administering morphine drip shortly. Her mouth sores are becoming more tender and she is sniffling again. They just did a mouth culture on on Amy. She is not to keen on having them done (who would?).

Hopefully, between the blood pressure meds and the morphine, Amy's pain will lessen. I hope that the antibiotics will take care of her sniffles, too.

On a ligher note, we put up posters of Golden Retriever puppies in Amy's hospital room that a good friend had shipped to us. We loved the posters! They reminded us all of the dog we used have, Digger, who died this past Spring but had been with Amy since she was born. Amy told us exactly where to put the posters. It is starting to look more like Amy's room as opposed to a hospital room.

Tuesday, September 10, 2002 at 09:27 AM (CDT)

Day +3
We awoke to a bright and sunny morning here in Minneapolis. Although Amy did not eat during the day, she got hungry yesterday evening and ate quite a bit from 7:30 to midnight. It is great that she is still eating solid food. We will try to ride that wave for as far as it will take us before she will need to be put on the IV nutrition.

Early this morning my parents left by car to return to Boston but got to spend some time with Amy yesterday. Last night Nana Roma and Papa Louie sat with Amy while Beth and I went out to grab a quick dinner nearby from 5-7PM. It was a real treat for Beth and me. We went to a restaurant called SteakKnife adjacent to the campus in a small section of Minneapolis called "Dinkytown". It was fun to get out for an hour or two and unwind a little. The college flavor of "Dinkytown" reminded me a little of a much scaled down Northampton or Amherst. We appreciate Nana Roma and Papa Louie providing us with the chance to get out of the hospital for a little while. For Beth and me it was great to have a meal that wasn't from the hospital cafeteria. Amy really appreciated them being able to spend some time with her, too.

Amy is progressing according to plan. Fortunately, no headaches this morning or last night for Amy. Because her blood pressure was high this morning she needed to take hypertensive medication to bring it down. It appears to be under control. We should know more about her liver function, glucose levels and insulin in about an hour. The attending physican and her staff usually come by around 10:30 to discuss Amy's progress. Someone's knocking on the door...got to go.

Monday, September 09, 2002 at 11:04 AM (CDT)

Day +2 Welcome to the Morphine Drip

Shortly after the last journal entry Amy's glucose level started to bounce around again. So last night she went through the hourly ritual of blood draws to determine blood sugar levels and subsequent adjustments with appropriate amounts of insulin. Her potassium levels have been low. Yesterday her liver function test came back high so they cut back on her antifungal medication. Today her liver function test had come down to the acceptable range and she is now back on the Itrecanazole (antifungal med).

Since yesterday Amy has been compaining of stomach pains and a head ache by the back of her neck. Amy is stubborn and her pain threshold is much higher than mine so for her tell me (as well as the doctors) it must really hurt.

Previously they may have treated minor headaches by Tylenol but now given Amy's obliterated immune system, they do not want to mask an infection with temperature reducing pain relievers.

From this point on if she is in significant pain they will administer appropriate dosages of morphine.

Sunday, September 08, 2002 at 06:11 PM (CDT)

Day +1 So Far So Good

Amy had a good day today but was sad to say goodbye to Amy's Grandmother, Ruth, and her 5 year old brother, Dennis. It was nice for all of us to get to see them. Dennis' enthusiasm and easy laughs were very good medicine for all of us.
Amy's other grandparents, Papa Louie and Nana Roma drove Dennis, Grandma Ruth, and me to the airport. Nana Roma and Papa Louie will be leaving Tuesday morning to drive back to Boston. They have all been a big help to us while they have been here.
Tomorrow is Dennis' first day of Kindergarten. Beth and I are sorry to be missing out on that special day for him but Beth's mom has promised to take pictures for us as he boards the school bus.
Amy's glucose levels are relatively stable and in the safe range today. She hasn't needed any insulin since early this morning. Her mouth sores are still not too painful and she is getting ready to eat some Domino Pizza and Cinnastix.
Gotta go!

Saturday, September 07, 2002 at 11:48 AM (CDT)

Day 0 Better Late Than Never

Amy, Beth, and I were up all Friday night anxiously waiting to find out when Amy's BMT would take place. We were told the unprocessed donor's marrow arrived by plane sometime around 2PM. Next, it would be processed and brought up to our room. It takes time for the "Cell Wizards" in the lab to do their magic with enhancing the CD 34 stem cells and removing most of the immune repsonse T-cells. We were anxious and tired. It was another "hurry up and wait" kind of day except this was a big day for all of us. Fortunately, a friend had mailed us a videotape of their Labor Day party (that we traditionally go to but obviously missed this year) and we had a lot of laughs watching it. It really helped pass the time. Finally around midnight, we were told the processed marrow would be coming up soon. We were so relieved.

Amy's bone marrow transplant took place in her hospital room @ 1:21 AM early this morning. The nurses were very nice and we had a small celebration to mark the occasion. Around 1PM today (12 hours from the initial transplant) she will also receive what is referred to as an "Add Back", which is an infusion of more marrow but this time it will have fewer "T-cells" removed from it. This is part of the overall protocol and it is not a surprise.

Amy is sleeping right now. The poor thing has not had much sleep as those of you who have been following the journal entries know. So, we are thankful she is comfortable enough to rest. Her glucose levels are still bouncing around so she has been receiving various levels of insulin to try to stablize her blood sugar level. She has also begun receiving GCSF to stimulate the blood producing activity of those new stem cells.

Everything is going according to plan...even if it is taking a little longer than originally anticipated. In the next few days we will be trying to post some pictures of Amy's pre BMT experience. Thank you all for your kind words, positive thoughts, and heartfelt prayers. We appreciate it.

Friday, September 06, 2002 at 01:41 PM (CDT)

Day -0 Transplant Day

Last night was another restless evening as Amy needed almost hourly blood draws to check the glucose level in her blood. Because of the high amount of sugar in her blood she did require various levels of insulin through her IV. We have been told this is not uncommon for kids who have gone through radiation and chemo. This morning Amy had a terrible headache, very red flushed cheeks, high blood pressure, and the "dry heaves". Not a great way to start off the day.
But the good news is that Amy's nurse (God bless her!) came to the rescue this morning and got Amy anti-nausea medication, pain medication and high blood pressure medication right away. She has been restling comfortably for awhile now.
Amy's donated marrow is on the plane headed toi Minneapolis as I write this. Later today the donor's bone marrow arrives. All we know is the the donor is a woman and that she is a 5 out of 6 HLA match for our daughter. Out of 4.5 million potential donors in the bone marrow registry, she was the closest we could come to a "perfect match". Thank God she volunteered or I am not sure what we would have been able to do.
Sometime today the donor went in to an approved bone marrow harvesting medical center near where she lived - most hospitals are approved for this procedure (and it might even be in Europe). She probably was admitted as a "day patient". During the procedure she was put under general anesthesia and had 2 - 3% of her marrow harvested from her hip bone. Our mystery donor's body will replace her harvested marrow within 2 to 3 weeks. She will probably go home later today to rest. Her lower back will be sore for a day or two. They claim the pain is similar to falling on the ice and landing on your bottom.
We are grateful to this mystery woman for giving our daughter a new chance for a healthier life.
Today will be Amy's new birthday, her transplant-day. It looks now like it will take place sometime this evening. Ironically, this evening is also Rosh HaShana, the start of the Jewish New Year, too.
Rosh HaShana is both a solemn and happy day. It is a time for introspection, asking for forgiveness, giving forgiveness, resolving to do better, remembering God is our King and Judge, and praying for a healthy and happy year to come. Solemn in our repentance, but happy in our confidence that God is merciful and good.
Amy's transplant day is both a solemn and happy day, too. Soon a chaplain, Father Leo, will come to give a blessing ceremony for Amy and her impending transplant.
Thank you all for your kind prayers and entries in the guestbook. Amy, Beth and I really enjoy reading them. Please keep thinking the good thoughts.

Thursday, September 05, 2002 at 09:38 AM (CDT)

Day -1

Last night was another relatively sleepless night. Besides the hourly blood draws to determine her glucose levels and whether she needed insulin or not (which she did) and the peeing every two hours, they could tell by weighing her that she was retaining water so they gave her Lasix. The good news is that Lasix helps you get rid of retained water, the bad news is that you have an almost uncontrollable urge to pee for several hours. So, from about Midnight until about 3AM Amy and we moved from bed to bathroom to sink to wash our hands and back to bed only to have to repeat the process about 10 minutes later - all of this with Amy attached to her 9 bags of assorted IV meds.
Amy is being weaned off the chemo and will not have to continue with the IV flushing of fluids after noon today.
She is so thrilled to be able to have a break and a good night's sleep tonight! The other exciting news is that we will be moving into the new BMT ward later today. The room Amy will be moving into will have its own bathroom and shower. We can't wait to see it.
Later today she will have a dressing change on her central IV and have a shower in her new room. Amy is excited and upbeat. Gotta get ready for the move!!

Wednesday, September 04, 2002 at 10:30 AM (CDT)

Day -2 Taste Buds & Giggles

This morning Amy and Beth had a case of the giggles. I am sure it is due in no small part to the sleep deprivation they have incurred over the past few days. Regardless, it was nice to arrive at 7:30 and have them answer my questions by giggling incessantly. It was a refreshing change from late last night when Amy was so upset that things don't seem to taste the same way.
The last straw was when Amy tried to drink her beloved Mountain Dew (and those of you who know Amy know what I mean - so if you own Pepsi stock you better sell, sell, sell!) and it didn't taste "right" to her. Her favorite drink gone from her limited food repertoire. She was upset. It was disquieting not only because of the Mountain Dew but also the prospect of her other favorite foods not tasting that familiar and delicious way. Would everything taste bad from now on?
We reassured her it was only temporary but her lack of a good night sleep combined with this latest change was just too much for her. It is not uncommon from the radiation and some of the chemo to affect the taste buds temporarily.
Earlier on Tuesday, my parents arrived. They offered to watch a video with Amy while Beth and I went to a restaurant a block away called "Sally's". We really appreciated having the opportunity to have a quick dinner with just the two of us and unwind a little bit.
Later today Beth's mom and our son Dennis will be arriving.
We are looking forward to seeing little Dennis so much. We miss the little guy.

Tuesday, September 03, 2002 at 09:43 AM (CDT)

Day -3 Another long night, but better

Amy seems to be tolerating the chemo better. Thank you all for your kind prayers and please keep them coming! Beth stayed last night with Amy. Because of the chemo's potential side effect of irritating the bladder, she is flushed with fluids for 4 days and has to pee every two hours. So needless to say among the blood draws, the meds, the checking of "vitals", and the scheduled pees, there is not much time left for sleeping.
Amy is now on insulin, as well as the IV nutrition. She seems to be tolerating it okay. Her Hematocrit (23.1), Hemoglobin (8.1) and Platelets (16K) are starting to drop again, so I wouldn't be surprised if she gets transfused with red cells and platelets in the next day or so.
Once again, kudos to the doctors, nurses and the aides for being so nice and willing to answer all of Amy's questions (and ours). They have been right on top of everything and have been very reassuring.

Monday, September 02, 2002 at 09:26 AM (CDT)

Day -4 Long Night
Michael had the night off and was able to get a good night sleep at the apartment. Amy had a rough night, throwing up and having to get up every two hours to go to the bathroom. The poor thing, even if she doesnt have to go, they give her medicine that will make her go.

Amy begins her day with more Chemo, Fludarabine, ATG and more antibiotics, and will continue to have to get up every two hours to pee.

She's resting now in her bed watching 7th Heaven. Amy has been such a trooper with everything. She continues to ask everyone who they are, and what they are doing. She's right on top of everything.

I need some praying from everyone. Pray that Amy tolerates the Chemo, ATG and Fludarbine and no longer gets sick. She hasnt eaten anything since Thursday and will have to start having her nutrition through her IV this evening.

Thanks for checking on us and enjoy each day with the people you love.

Sunday, September 01, 2002 at 07:03 PM (CDT)

Day -4 First Day of Chemo

Amy's first day of chemo went pretty well. She vomited a little but not like the horrendous repeat of yesterday. So far she seems to be tolerating the chemo okay. Altogether she has about 9 different lines of fluid going into her but she is taking it all in stride.
Her nurses have been wonderful and her nurses aides have been very kind, too. Today, we got to meet Dr. Ramsey, who will be overseeing the next two weeks of Amy's treatment including the BMT on Friday.

Saturday, August 31, 2002 at 07:51 PM (CDT)

Day -6 Update

Our First Bump In the Road

Within two hours after returning from radiation, Amy spiked a fever of almost 104 degrees. Ironically, within the same time frame test results came back from the Sinus tap confirming she has staph and strep infections. She was immediately put on antibiotics through IV which was good because by now she had become nauseous...very nauseous.
It is now 8:15 PM Amy is resting comfortably and sleeping. She still has a fever but not as high. Fortunately, she has not thrown up in a couple of hours. The emotional roller coaster ride called a bone marrow transplant is now underway in earnest. Beth is exhausted and just left for the apartment. I will be staying overnight with Amy.
Tomorrow the chemotherapy begins.

Saturday, August 31, 2002 at 11:39 AM (CDT)

Day -6 Amy Receives Total Body Irradiation

Last night was Amy's first night on the BMT ward. They allow one parent to sleep overnight in her room. She asked that I stay with her. Tonight will be Beth's turn. For now, I assume we will alternate nights. We are slowly getting used to this new routine. Aside from a nose bleed at 2 in the morning last night, it was relatively uneventful. So far so good.
Amy tolerated the radiation procedure today better than we had thought. She listened to a CD that her friend Sara had recorded for her. It really helped her get through what would have been a very anxious procedure for anyone. She is resting comfortably now in her hospital bed while watching "Pretty in Pink".
Tomorrow the chemotherapy begins.

Friday, August 30, 2002 at 07:46 PM (CDT)

Day -7 5:30 AM Bone Marrow Harvest And Sinus Tap

We got up early this morning to head over to the hospital for Amy's bone marrow harvest and sinus tap. It was dark when the three of us left our apartment but we were surprised to see the surgical suite already had quite a few patients lined up for procedures.
Amy's bone marrow harvest went well and the sinus tap was slow but uneventful - we are still awaiting the results. Nevertheless, it took several hours for the procedures to be completed and even then Amy was not moved from the post-op recovery area up to the BMT ward until close to noon. Noon doesn't seem that long until you consider it's 6 and a half hours from the time we checked in for surgery.
When we were moved up to the BMT ward, there was quite a bit of activity in the room next to ours with people (they looked like family members) crying. About an hour later after Amy was settled into her room, I went down the hall and saw that the room was now empty. That's how it is here. Some of the kids who need BMT's are very sick. Some have had cancer and were treated years ago with chemo and/or radiation and now require a BMT because they have relapsed. Others have BMT's that have failed. Some are battling dangerous infections and graft versus host disease. Some like Amy have bone marrow failure.
Everyone here is seriously ill.
We are going to be here in the BMT ward for awhile...at least a month even if all goes well. Tomorrow, Amy receives her total body irradiation and the chemotherapy will quickly follow. We need to kill off her existing marrow and suppress her immune system so she can receive the new marrow and allow it to engraft. We have already been told to expect nausea, hair loss, and mouth sores. We will be watching out for graft versus host disease but will not deal with that until her new marrow engrafts. We have enough to contend with for now.
On a positive note, the staff here at Fairview University Medical Center have been wonderful. They are kind and attentive to Amy. They have been very receptive to any and all requests Beth and I have made. If we ask something and they don't know the answer, they admit it and tell us they will go and find out for us...and they do! Shortly after arriving in the BMT ward we had a special treat meeting the mother of another Fanconi Anemia patient also undergoing a BMT. They have been here in Minnesota for over two months. It was very kind of Sharon to introduce herself to us, reassure Amy, and make us feel welcomed. As we move further along with transplant we will try to make other FA families feel equally welcomed.
Those of you who have been sending your thoughts and prayers our way please include Sharon's son, Alex, too, as he has run into some complications.

Thursday, August 29, 2002 at 07:21 AM (CDT)

Day -8 Last Day Before Amy Begins Her Long Stay In the Hospital

Tomorrow, Amy begins her stay in the Bone Marrow Transplant ward. We need to be at the hospital at 5:30 AM for Amy to have a bone marrow harvest performed on her existing marrow. They will store this as a "back-up" in case there is a problem within the next few weeks with the new donor marrow engrafting. We hope we will not have to use the "back-up" marrow but we will have it banked just in case.
Amy will be sore, especially considering she just had a bone marrow biopsy performed last week but as most of you know, Amy doesn't complain about the big things. She figures a way to get through them...and so must Beth and me. On Saturday, Amy receives her TBI (Total Body Irradiation). Once that is completed then the chemotherapy begins. Then on next Friday, Amy receives the new donor marrow. And then over the next few weeks we wait, hope, and pray for a strong, fast, and relatively infection-free engraftment.
We are in this for the long haul. So we'll take it one day at a time. And seeing that this is Amy's last day before a long hospital stay, we will be doing something fun and enjoy the day.

Wednesday, August 28, 2002 at 10:38 AM (CDT)

Day -9 A day off!!

No tests, no consults, just a free day to enjoy! Yesterday our consult with the ENT (Ear, Nose, Throat) surgeon did not go as well as planned. He claimed to see something in Amy's sinuses. When she has her bone marrow harvest performed Friday morning, he will also go in and perform a biopsy of it, too.
You should have seen the expression on Amy's face when he said so nonchalantly that he would simply stick a needle up her nose and take a sample! It was priceless!! Oh well, there's always something.
Last night we rented a video, The Rookie. We really enjoyed it. It was very reaffirming to see how Jim Morris beat formidable odds and achieved his dream. It was nice to spend some special time with Amy.

Tuesday, August 27, 2002 at 07:58 AM (CDT)

Day -10
Today we meet with an Ear, Nose, Throat specialist. This is per the direction of the infectious diseases specialist we had consulted with last week just to confirm Amy's sinuses are okay and infection free. We also have our daily visit to the BMT clinic. Other than that it is a pretty wide open day. Yesterday we were told to come in at 5:30 AM on Friday for Amy's bone marrow harvest. Her TBI (total body irradiation) will take place the following day and the chemotherapy will begin.
We will try to do some fun things over the next couple of days while Amy's immune system is still functioning.

Monday, August 26, 2002 at 09:17 AM (CDT)

Day -11
By last Friday all of Amy's pre-BMT diagnostic tests had been completed and we followed up with Dr. Peters to review the results. There were no surprises with regard to Amy's bone marrow biopsy (pre-leukemic clones, etc)and her marrow is cellular enough for them to perform a bone marrow harvesting prior to radiation to have as a "back-up" marrow in case the new marrow does not engraft. Her liver and kidney function tests all came back within the acceptable ranges which is wonderful because the chemotherapy, radiation, and immunosuppressive meds will greatly tax her organs. Her lungs are strong and clear.
She is strong going into all of this and that is what we hope and pray will give her the competitive edge for a successful outcome.
On Friday early evening she received her first red blood cell transfusion. Since last Tuesday we have already put the Hickman central line to good use. She has probably had about 30 tubes filled from about 12 blood draws since it was surgically attached to her.
Right after Amy's red blood cell transfusion we went to the Metrodome to watch the Vikings play the Tennessee Titans. Our Care Partner coordinator, Alex, from Fairview gave them to us earlier in the day. It was very nice of her and unexpected. We bought Amy a Viking's shirt. The seats were great! They were right at the 40 yard line. The metrodome is loud and the Vikings fans are very loyal. It was a sea of purple and yellow wherever you looked.
The only downside was that on Friday ragweed season hit hard. It started with the sniffles on Friday but on Saturday I was totally laid out coughing, sneezing and runny nose. Normally, this would just be an inconvenience for me. But given Amy's state of health and the daily visits to the bone marrow transplant clinic with many patients who are immune-suppressed, my exposure to Amy and them could have disastrous consequences. So I went into semi-quarantine to recuperate while Beth took Amy to clinic on Saturday and Sunday...and will today too, just to play it safe.

Wednesday, August 21, 2002 at 06:40 AM (CDT)

Day -16 Another full day of medical tests

Our day started @ 7:30 in the AM in Nuclear
Medicine for a GFR (Granular Filtration Rate test)that was completed by noon. It involved drinking a lot of water prior to the scan and then blood draws and medications on regular intervals for about four hours. Amy was pretty sore and stiff from the bone marrow biopsy on her hip and the insertion of the Hickman central line in her chest yesterday but she was rallied through. She got to put the central line to good use right away with the GFR. She also had a renal (kidney) and liver ultrasound performed. Later on in the day she had an pulmonary (lungs) function battery of tests performed that took about an hour and a half followed by an echocardiagram. Then we met with our BMT coordinator to go over the transplant procedure and the medications Amy will be on not only during transplant but also for at least 9 months post-transplant. As you can imagine it was another full day at the hospital. Our schedule was so busy had we not forced ourselves to go up to the cafeteria @ 2 PM we would not have eaten lunch.
We are starting get accustomed to our surroundings here at Fairview.
Because a BMT includes so many medical specialties we have travelled to most of the buildings within the Hospital complex already. The nurses, doctors and medical support team are very friendly and helpful. While Amy was waiting for the third round of blood draws for the GFR a woman (We think she was also a patient) started up a converstion with her and later came back with a gift, a small angel, from the gift shop. It was a very nice surprise. We are not sure if this is unique to Fairview, the University of Minnesota, or applicable to Minnesotans at large. Although our scheduling of tests and procedures has been demanding, the helpfulness of staff to provide directions, assist with scheduling, and follow up for us has been so nice and frankly unexpected. I think Bostonians could learn a thing or two about hospitality from the Minnesotans.
We have settled in to our apartment. We are so lucky and grateful to have it. It is only 4 blocks from the hospital. We were on the waiting list for 4 months and lucked out. Found a grocery store and a Target's within a ten minute drive... what else could you need?
Tomorrow, (Thursday) @ 7:30 AM Amy has a CT of the chest, abdomen, pelvis and sinus. She has to drink a 16 0z barium based "smoothie" between 6AM and 7AM and we use the term smoothie very loosely. If you know Amy, getting her to drink that will be quite a challenge (for her and for us).
Talk to you soon!

Tuesday, August 20, 2002 at 10:12 PM (CDT)

Day -17
This morning Amy had a bone marrow biopsy performed and her central IV line surgically attached to her jugular vein via her chest. Everyone at the surgical center were extremely nice but Amy was very apprehensive.
Once she was prepped, I accompanied her as she went in to receive general anesthesia. The operating room was small, cold, and extremely well lit. Her gurney was wheeled up next to specialized equipment (it looked like a CAT scan machine) to assist with the insertion of the central line. She resisted placing the gas mask on her face, pleading "Please, please let me ask one more question." The anesthesiologist finally relented, and Amy asked, "Will I be okay after this?"
After Amy was reassured by the surgical team, the mask was put on her face and within a half-minute she was under. I was led out of the operating room and sent to the waiting room. For the next few minutes while I was alone I kept playing that scene over in my head wiping tears from my eyes as I wished I could make Amy's disease go away and spare her from the pain she has had to endure...and will have to endure. Amy was finally discharged from the hospital at 6:30PM. She was very sore from the surgery on her chest and her hip.
Tomorrow a GFR scan, renal ultrasound, liver ultrasound, pulmonary function test, echocardiagram. On Thursday, a CT scan of the chest, abdomen, pelvis and sinus. We still have so far to go. The toughest parts are in the offing once the radiation, chemo and transplant have taken place.

Monday, August 19, 2002 at 09:34 PM (CDT)

Day -18 and 1534.6 miles later we arrive at our new home!

After leaving Sunday morning around 9 AM from Kalamazoo, MI we arrived at Minneapolis, MN at 7:30 that night. It was a beautiful day but those last 500 miles made for a long trip.
Michigan, Indiana, Illinois, Wisconsin, and finally Minnesota made for very diverse scenery and a pretty ride. I was just grateful that we arrived before sunset in Minneapolis. After travelling that distance the last thing I wanted to do was get lost within the last 5 miles. Monday morning we started the day at 8AM in the BMT clinic. Then we went to the radiation department for a consult and a simulation. I don't know how to describe how I felt when I saw the radiation technician measure Amy with the calipers and have her sit up on the radiation table in the position she will have to pose when she receives total body irradiation. Then the radioligist explained the risks and potential side effects of total body irradiation. It was hard. What will the future hold in store for Amy? How well will she tolerate the TBI? Next we met with the attending BMT surgeon who will be overseeing Amy for the first two weeks, then it was on to the cardiology center to consult with the surgeon who was going to insert the central line in Amy's chest on Tuesday. She will have this IV line iserted into her indefinitely until at least the next 100 days. Amy also had to get chest xrays, an ekg, and a Panorex X-ray. We started at 8AM and didn't leave the hospital until after 6PM. We were exhausted, overwhelmed and knew that tomorrow (Tuesday)it would start all over again, except this time it was surgery - the insertion of a permanent central line into Amy's Jugular vein via her chest, and a bone marrow biopsy.
But before we could relax we needed to move in to our new apartment and unpack. Whew!

Sunday, August 18, 2002 at 09:16 PM (CDT)

Best Laid Plans... Day -19

From Niagra Falls, Ontario to Kalamazoo, Michigan
Although we loved travelling through Niagra Falls, and subsequently through Niagra-on-the-Lake (what a beautiful town!), because of the incredible traffic jam on Saturday crossing at the border at Sarnia, Ontario/Port Huron, Michigan we were not going to be able to make the ferry to cross from Ludington, Michigan to Manitowic, Wisconsin. Instead, we changed our itinerary and crossed the state of Michigan and stayed overnight in Kalamazoo, Michigan. Having to scramble cancelling ferry and hotel reservations at the last minute and then looking for a place to stay Saturday night (on a Saturday) was not an easy feat. But luck was on our side and we found a room in Kalamazoo! After breakdast we drive from Kalamazoo to Minneapolis for the last leg of our trip.

Saturday, August 17, 2002 at 08:21 AM (CDT)

Day -20 A Rainbow of Hope

Yesterday was a fun-filled day of exploring Niagra Falls. There is far more to do around here than I had ever imagined! Because we were only in Niagra for a day, we decided to take a tour. We could see the Horseshoe Falls and the American Falls from our hotel room, the view was incredible! We visited Table Rock for the "Journey Behind the Falls", the beautiful mosaic gardens, the butterfly conservatory, the floral clock, went to the top of the 1100' Skylon tower, and capped it off with the famous "Maid of the Mist" boat ride right into both Falls.

The day was very overcast which was okay because it kept us comfortable as we traveled from one Niagra attraction to the next. Amy and I thought the butterfly conservatory was pretty cool. There were hundreds of exotic and beautiful varieties of all sizes of butterflies flittering around. I had a very pretty and large butterfly land on my arm. Beth freaked out when a butterfly fluttered by her and she almost knocked over a 3 year old trying to avoid the butterfly. You would have thought it was a bird of prey swooping down on here. Amy and I laughed pretty hard.

When we got into the "Maid of the Mist" for our tour, it was cloudy, too. By the way did I mention, you will get wet on the "Maid of the Mist". The only question is whether you end up mostly drenched or totally soaked. Which I suppose is part of why the tour is so popular with kids. Amy asked me to try to get us at the front of the bow and we did (it's the wettest spot).

When we got right under the cascading water from the Canadian Falls, the sun broke from the clouds and a beautiful rainbow appeared with its arch vibrant and clear extending from one side of the Falls to the other. It was beautiful. It was unexpected. The three of us made a wish for a positive outcome for Amy. We were so happy.

Today we check out of the hotel room and continue our westward journey. Next stop, Ludington, Michigan to catch the ferry to Manitowoc, WI.

Friday, August 16, 2002 at 07:27 AM (CDT)

Niagara Falls...slowly I turned step by step
We crossed the Canadian border late last night and pulled in to our Hotel at Niagara Falls. Thank God they didn't decide to inspect all our belongings at the customs inspection station since our mini-van looks a little-bit like it was packed by Jed Clampett for the Beverly Hillbillies on their way from Bugtustle to California. 3 months is a long time to pack for.
Even at close to midnight the Falls looked spectacular. We will be taking a (hopefully) ride on the "Maid on the Mist" later today and one or two other attractions before we continue on with our westward trip toward Minneapolis.

Thursday, August 15, 2002 at 08:30 AM (CDT)

Day-22 The Journey Begins...
In a few short minutes we will be leaving for Minneapolis stopping off at Niagra Falls along the way. We all had restless sleep last night. So much to ponder. So much to handle. I am sure we have forgotten to pack everything we'll need but at this point we don't care. Our time to take the next step has arrived. Please keep the positive thoughts coming.

Tuesday, August 13, 2002 at 09:56 PM (CDT)

Day -24

Today, Amy came to work with me for my last day in the office. She enjoyed the drive to Maynard, MA and exploring Clocktower Place with all of TMP/ Monster.com's offices. She had a ball making copies and labels and even pretended answering the phone(I have a work-related all-day meeting tomorrow in Connecticut but will not be returning to the office before we leave). At the all-staff meeting today in the Monster den, Amy and I were introduced to everyone and wished good luck for the upcoming transplant. Everyone was extraordinarily nice and it was a wonderful experience for Amy and me. Amy and I were thrilled.

On Thursday Amy, my wife Beth, and I leave for Minnesota. Our 5 year old son, Dennis, will be staying behind with my mother-in-law. We are going to miss him terribly but it is for the best. We'll be driving out to Minneapolis and are planning on stopping at Niagra Falls in Ontario, Canada on the way to break up the trip. Next Monday, August 19th, Amy will have her central line put in her chest and she will undergo a battery of pre-tr