Journal History

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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

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 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