Thursday, June 3, 2004 10:16 PM CDT

Day 10

First I thought we would start tonight’s web date with some good news.

Michael’s white blood count (WBC) this morning was at 800 (up from 200 on Wednesday). His ANC was at 700. The Absolute Neutrophil Count is the amount of white blood cells that will help his body fight off infection. While 700 is a very low number it is still a number going in the right direct (UP !!)

Here is a quick definition of why this ANC is so very important:
Absolute Neutrophil Count or ANC is a way for doctors to scientifically determine the stage that the immune system is in after response to chemotherapy. ANC is the real or actual number of white blood cells that a patient has to fight an infection. White blood cells are the part of the patient’s blood that works against possible bacteria, fungus, or viruses that may make the patient sick. A normal ANC is greater than 2,500. A safe ANC is greater than 1,000. After chemotherapy, BMT, and radiation, a patient's ANC may drop low as 0. When the ANC drops below 500, it is important that patient's remain away from crowds and people who have colds, flu, or runny noses. If patients are in the hospital with ANC below 500, he will be placed in protective isolation. This is to protect the patient from being exposed to possible infections.

Okay so if his ANC continues to be above 500 for three continuous days Michael will be able to leave his isolation room for short periods of time and walk around the hallway of the bone marrow transplant ward while wearing a protective mask (yes an OSHA approved N-95 mask –Sgt. Miffitt :>). We are hoping that this happens and his WBC continues to rise.

Now a word of caution must be inserted here (don’t you hate those?) The doctors have told us in the past not to get hung up on watching the numbers because they do fluctuate. Also we are hoping that these rise in numbers is because the new marrow working and growing and not Michael’s old immune system trying to make a come back. This would mean that his body is rejecting the new marrow. But with his counts jumping that high in a day one can only hope it is that good old Maxwell Marrow working.

The other good news is that morphine is working on Michael’s pain. He has a continuous drip of morphine to help make him more comfortable. He did have some slight bumps today where he was throwing up stomach acid and a fair amount of blood. The staff believes this is just side effects from the chemo. He also had to receive a platelet transfusion because his levels have dropped to 13,000. He had a transfusion of platelets four days ago and his platelet counts have dropped steadily since. This latest transfusion will give his body a boost while it rebuilds itself. Otherwise he is doing okay. He was trying to eat some pasta tonight and keep that down.

In other news, for those of you that want to read a great story on-line go to www.todays-christian.com It is the story that was written by Elizabeth (Beth) Wehman about John Maxwell and his life saving bone marrow donations to Tracy and Rachel. The story was written two years ago but was just published in the magazine this month. It is a very strong reminder to EVERYONE to please get on the National Marrow Donor Program and help save lives.

The last news bit of the day is we would like to welcome Ryan F. from Michael’s 1st grade class to the “I want to be like Mike hair club”. Ryan had his head shaved and e-mailed us a picture. When I showed the picture to Michael it put a very big smile on his face.

That’s all for now folks.

Love,
Mel
FRIDAY JUNE 11th PRAY FOR 100 PERCENT DONOR CELL'S

Wednesday, June 2, 2004 9:22 PM CDT

Day 9

Today Mikey had a tough day. He woke up this morning crying in pain. He told me his knees hurt. On a scale from 1-10 he said a "9". Mikey never complains so when he said it was a "9" I knew he was hurting. After talking to the doctors, they decided to give him a dose of morphine to help with the pain. After a couple of hours of him crying and moaning in pain the morphine finally kicked in.

The body aches are a common side effect of the drug GCSF. This drug is a growth factor and helps his white cells grow. So even though it causes the body to ache he still has to have it every day so the white cells grow.

This afternoon the doctors decided to give him a continuous morphine drip to help with the pain. By keeping him on the continuous drip his pain should stay on the mild side (hopefully).

The doctor also told us today that he probably has not hit his "peak of pain" yet. It will get worse before it gets better.

They are also checking his glucose levels every 8 hours. His sugar levels are high and he might need some insulin to keep it under control. This is also a commmon side effect from all the steroids he is on.

Despite all that happened today Mikey was still in great spirits. His doctor said that everything is going as well as expected and that everything that he is going through is normal for a transplant patient.


Love Jackie

Tuesday, June 1, 2004 11:17 PM CDT

Day 8


Waiting, waiting, waiting, waiting………………

That is the short version of the update.


Here is the long version:

We are waiting for his white blood cells to start making an appearance. As Jackie mentioned in yesterday’s update. These are the cells that will start helping to fight off infections. A normal WBC count would be in the 6.0 to 17.0 range. Michael’s reading today 0.2 Another reason these numbers are checked is to see if the transplant worked. We won’t know for a few weeks if these numbers are Michael’s “old” immune system rejecting the “new” marrow or if in fact it is the “new” marrow starting to work.

Michael’s eyes are very light sensitive so most of the day we sit in his room with all the lights off. He has been in the same small room for 16 days now and the signs are starting to show. He doesn’t talk much and has little interest in doing many activities. For a portion of his school work he has to keep a journal with illustrations in it. The first day he drew himself sitting in his hospital bed smiling with the caption “I’m glad to be having my bone marrow transplant.” Last week he drew himself (with the green Mohawk) in his hospital room smiling with a caption about how happy he was. Today’s caption read “I wish I could go home” with an illustration of our home in Connecticut. It got the point across to Jackie and me and made us feel that much more helpless.

As Jackie mentioned his lips are very chapped from the radiation, chemo, and medications so it is hard for him to talk. His face is puffy because the chemo destroys blood vessels and now Michael’s facial tissue are retaining water. They are monitoring his blood sugar levels. If they continue to be high they will start him on insulin. The high blood sugar, along with his blood pressure is caused by the different medications. He may have to be on the insulin and high blood pressure meds for several months.

His hair started coming out today in small clumps. He was able to easily pull his green Mohawk hairs out while taking a shower. So I shaved the rest of his hair this afternoon to avoid it ending up on his pillow.

Otherwise folks not much else to tell you at this point. Just another day in paradise. It was a nice rainy 48 degree day (for the 1st of June) and the Timberwolfs lost to the Lakers so some people in Minnesota were not in a good mood today. (We don’t mention the fact that the UConn Woman’s Team kicked the University of Minnesota’s butts a few months back) :>)

Love,

Mel

Monday, May 31, 2004 8:40 PM CDT

Day 7

Hi Everyone:

Mikey is doing okay. His spirits are still good. He still does not have much of an apetite but he did eat some soup yesterday and today. Any little bit of food helps.

He does not have any mouth sores yet, but we believe he has some in his throat. Anytime he swallows something he says his throat hurts. His lips are also really chapped. His eyes are also starting to get really sensitive to light. All these things are reactions to the chemo, so they are not unexpected.

Starting today the doctors are checking for his white cells to come in (they do this through his daily blood work.) The white cells are the cells that fight infections. So once they start coming in he will be at a lesser risk for infection. The doctor says that they can start showing up in as little as one week or several more weeks. So we just sit and wait.

Love Jackie

Saturday, May 29, 2004 8:41 PM CDT

Day 5 (only 95 to go)

Michael is doing okay. He has been sleeping a little more and has very little of his appetite left. But otherwise he is hanging in there. All of the nurses love his green Mohawk.

Since Michael is feeling a little better and sitting next to me as I type this I thought he wouldn’t mind doing a little interview for everyone. (These are his actual answers and haven’t been modified by the censors)

Question- Mike, how are you feeling so far?
Answer- Great

Q- How do you like the hospital food?
A- Ummm good (a little bit of a pause before we got that answer folks)

Q- What is your favorite thing about Minnesota?
A- The Mall of America

Q- What do you think of the weather out here?
A- Cloudy and raining. (Actually he isn’t that far off – it is suppose to rain for the next 7 days or so)

Q- What do you miss most in Connecticut?
A- School

Q- What is the first thing you want to do when you get out of the hospital?
A- Go to Fridays (must be a second shift thing huh guys?)

Q- What do you like most about the hospital?
A- That’s a hard one. Dad,… Dad,… Dad, stopping typing everything I’m saying. (now he is just hitting my leg and laughing). When people send me cards.

Q- How has Rachel been treating you?
A- Great

Q- Is there any else you would like to say to our studio audience?
A- Hi to everyone and thanks for sending me the cards and e-mails and checking our website.


We would also like to welcome our friend Abbey to the BMT (Bone Marrow Transplant) floor. If you would like to send her a get well message her web site is www.caringbridge.org/ut/abbeystuart
She is doing well and loves it when Rachel stops by to play with her.

Michael can’t leave the special room he is in so he can’t go visit Abbey right now. That was another reason (besides the weather) that we had to cancel the huge Memorial Day picnic that we had planned.

That is about it for now folks. There are some new pictures posted in the album for your enjoyment.

Love,

Mike & Mel

Thursday, May 27, 2004 9:26 PM CDT

Day +3

Well, I will start tonight's update by telling everyone that I will not be shaving my head too. I think I will leave that bonding experience to Mel and Mikey. I think they both look great (it took me a while to start breathing again after their trick).

Well, today was pretty uneventful so far. Mel is staying with Mikey tonight at the hospital so who knows what we are in for in the morning.

The day started off relatively quiet. Mikey had his visit with his teacher in the morning. After that he called his first grade class at Windermere School in Ellington. We try and do this once a week so he can talk to his friends.
Then he took a nap for a couple hours. When Rachel and Mel came he was starting to get some of his energy back. He did his homework while Rachel worked on her school work. Then they played some video games.

He doesn't have much of an apetite, which is common at this point in transplant. They were able to give him some medicine to help with the naseau he has been feeling. Hopefully that will get better soon.


So all in all it was a quiet day.

I will let you know tomorrow what jokes Mel and Mikey play on us in the morning.

Love Jackie

Thursday, May 27, 2004 1:15 AM CDT

Day 2

First the serious stuff:

Michael is starting to feel the effects of the chemotherapy. He is losing his appetite and has been getting sick to his stomach. Usually right after he eats something. As of tonight the doctors have started him on TPN which stands for something something nutrition. Okay maybe that isn’t the technical term but basically it is liquid food. He can still try to eat but this will help him from losing weight. He is also more tired but that is to be expected.

We spoke to John tonight and he is doing great and feeling fine. He even offered to give more marrow if Michael needs a boost. John you are an amazing person.

I drove Sue to the airport today and she flew back to Boston. We will truly miss her around here. She has always been very close to us and the kids. She is a great person and I couldn’t ask for a better sister in the world. (I just hope she doesn’t read this part because it will go to her head). Rachel and Michael already miss her as much as we do.

Okay now for the fun stuff:

I know that sometimes this web page is not easy to read and deals with some “delicate issues”. It is also difficult to have a lot of fun in a hospital setting especially for the children and families confined to a single room for over a month.

Well we had been telling Michael all day that he should consider having his head shaved because it is going to start falling out soon due to the chemo. He didn’t want any part of this and I think he felt very self conscious. So last night I was staying overnight with Michael at the hospital. Jackie, Sue, and Rachel had gone back to the apartment for the night. I began talking to Michael about his hair and shaving his head. He was still very hesitant. I felt very bad that he has to endure so much and was now worried about another upcoming change. I asked him if he would like to shave my head first. He looked at me and said “you would do that for me Dad?” and I told him yes because I loved him. I also made fun of it and asked him if he wanted to play a joke on his Mom, Sue, and Rachel? He perked right up and said he did.

So I went out to the nurse’s station and asked for a hair trimmer because I wanted to play a joke on our family. The nurses were very funny and excited about helping out. They gladly loaned me a hair trimmer. I returned to Michael’s room and we set up shop. Michael hopped off his bed and was soon shaving my head completely bald with the trimmer. He was laughing and having a great time. It was well worth it to hear him laughing and enjoying himself.

After my new look was finished (not that it was much of a change from the old look huh?) it was Michael’s turn. Well who said you can’t have a little fun with haircuts? I talked him into a brand new Mohawk haircut. He was very excited and happy with it. The nurses came into the room several times laughing at our new haircuts. Afterwards we cleaned up the mess and went to sleep. I think he feel asleep with the smile still on his face.

Wednesday morning we put our “plan” into action. I got a couple of surgical caps for our heads and some masks. I put a sign outside Michael’s door asking anyone who enters to please wear a mask and cap. Michael and I then covered our heads with the caps and put the masks on.

Jackie, Sue, and Rachel showed up at 10:00 a.m. and saw the sign on the door and immediately became concerned. One of the nurses had come into the room to watch their reactions. I asked her to put a mask on and go out into the hallway and give Jackie a mask and ask her to come into the room because we needed to talk to her about Michael’s “infection”. The nurse did this and I could see Rachel and Sue trying to peer into the room and see what was going on. Michael was sitting on his bed trying not to laugh under his cap and mask. Jackie entered the room wearing the mask as instructed and asked what was going on. I told her that the doctors were concerned about infections and wanted us to start wearing the protective garb in the room. I also told her that Michael had started losing his hair during the night. Jackie was stunned and didn’t believe us. Michael (right on cue) said “yes I did….…look !!!!” and ripped off his cap exposing his highly stylish Mohawk haircut. Jackie was stunned and while she was looking at Michael I was standing behind her. I took off my cap and said “you think that is bad, look what he did to me” and showed her my new look. Jackie turned around and said “Oh My God” and started screaming (I guess that was the reaction Mike and I were going for ?? –hahaha). Sue and Rachel heard the commotion inside the room and came through the door and saw Michael and me and started laughing. It was very funny and it was nice to see Michael having fun. Well does the story end here? …….. No

Everyone who knows Michael knows that he has a good sense of humor and loves to make people laugh. So he decided that he wanted to dye his Mohawk green. Yes folks I wrote green. So we spoke with one of the Child Life Specialist and she was very willing to help out. So Michael underwent more styling at the barber shop (also sometimes known as a hospital bone marrow transplant ward) for about an hour and a half. His Mohawk was dyed bright blond and then into a very nice shade of green. He was very happy with it and had a great time watching all of the staff coming into his room to see his new look.

Don’t worry these “Kodak moments” are posted in the photo album. Enjoy :>)

After Michael’s new hair color was finished and cleaned up we received a package from the Maxwell Family. It had been sent with the marrow courier but had been delayed getting to us. There were some gifts for Michael (a Rescue Hero and a beanie baby canine named Courage) along with a card and some photographs. One photo was a family photo of the Maxwells and the other was a close up photo of John and his 8 year old son Jackson. They had both shaved their heads on Sunday and wrote on the photo “We want to be like Mike”. The timing of this photograph could not have been planned any better.


There were now three of us who had shaved our heads to make a little boy feel loved.




Love,

Mel

Tuesday, May 25, 2004 8:11 PM CDT

Day 1


Michael’s new 2nd birthday is now May 24th !!!!

First off we would like to thank Lisa Maxwell for writing last nights web date and letting everyone know what she and John had to go through for the marrow extraction.

John’s marrow arrived here in Minneapolis around 4:00 p.m. (C.S.T.) and went directly to the lab. There the T-cells were depleted from the marrow itself. This process is only done on rare cases such as patients with Fanconi Anemia and takes several long hours to complete.

It was very long day of waiting for the bone marrow to arrive in Michael’s room. Michael was in good spirits and felt good. During the evening he broke out several times with red hives all over his body. This reaction most likely was caused from the last 5 days of Anti-Thymocyte Globulin (ATG) he had received. This is used to suppress his immune system. The hives did not last that long.

Around 12:00 a.m. Michael started his daily dose of Cyclosporine (CSA). It is taken to prevent rejection of the new marrow and graft versus host disease. When Michael receives the CSA it causes his blood pressure to rise very high. (It has been doing this all week). Well last night his blood pressure went up so quickly and high that he got a severe headache and started crying out in pain. The nurse quickly gave him some oral medication (not through his central line) to quickly bring his pressure down. Afterwards the nurses had to pre medicate him with Benadryl and Tylenol so he wouldn’t have a reaction to the marrow transfusion.

John’s Gift of Life (aka the plastic baggie of bone marrow) arrived in Michael’s room at 12:30 a.m. The bag was very small and contained a clear liquid. (Rachel’s marrow had a similar consistency of an apple juice looking liquid). The staff told us that each donation of marrow is different looking. I thought this was strange since it was from the same donor. We took several pictures of John’s “gift” with Michael and Rachel. Check the photo album.

The bag of marrow was hooked up to Michael’s I.V. and it took approximately 5 minutes for the whole process. For you new comers to the world of bone marrow transplants you might be a little surprised but that is all there is to the process = just an I.V. bag. The amazing thing about the process is that once the new marrow gets into Michael’s blood stream the marrow knows exactly where to go inside of Michael’s body.

Now comes the LONG wait. We won’t know if the transplant worked or not for at least 2 to 3 weeks. During this time period there will be daily blood work, hair loss from the chemo and radiation, mouth sores, nausea, loss of appetite, and possibly more side effects. This is if everything goes well and Michael’s “old” immune system doesn’t reject the “new” marrow as it tries to grow. But we won’t get that far ahead right now. The whole process is now out of our hands.

We would like to thank John Maxwell and the entire Maxwell family for their gift of life for Rachel and now Michael. I don’t know how many people realize this but this transplant was one for the record books. Now that John has donated his marrow a third time he joins a very elite group. John is now one of six people in the entire world to have donated his marrow three times to save a life. He saved Tracy in 1997, Rachel in 2001, and now Michael. He is truly an amazing person and we can not thank him enough for what he has done.

I encourage each and every person to please take a few minutes and get on the National Marrow Donor Program list. (Click on the link at the bottom of this page to get further info.) You CAN save a life.

You read the process John went through. It was a minor surgery where they took very small pieces of his marrow out of the small of his back. No big incisions and no stitches. He was discharged from the hospital the same day and is doing fine today. His body is already working on replacing the marrow that was removed.

Now I know this is an amazing story. But let me ask you what if John Maxwell had never decided to get his name on the marrow donor list? What if no one ever donated their marrow like John? Now what if it was your child (niece, nephew, cousin, mother, father, brother or sister) needed this “Gift of Life” and there was no one on the list of donors? Would that get your attention? Currently there are only about 5 million people on the donor list. This is a very small number compared to the billions of people in the entire world. Please take the time to read www.marrow.org and see how easy it is to get your name on the list. It only takes a little amount of your time. By getting your name on the list you could be saving the next “Michael or Rachel”.

I would also ask you to all say a prayer for our friend LaKota who lives next door. She is having her transplant today. She is having a cord blood transplant because there were no matching bone marrow donors on the list. What if YOU were that person that matched her or the hundreds of other families looking for a donor? Wouldn’t that be a wonderful gift? Please get on the National Registry there are hundreds of families who need you. LaKota’s web site is http://www.caringbridge.org/mn/laplafcan to send her your well wishes and prayers.


Remember www.marrow.org and please save a life.


Love,

Mel

Monday, May 24, 2004 6:20 PM CDT

**UPDATE 5/25/04 10:00 a.m. Michael's transplant didn't occur until 12:45 a.m. this morning -I will post update later this afternoon with photos - Mel**

Hello from John and Lisa!

Last night at 5:30 p.m., we left the Maxwell House in Lennon to deliver the kids to three separate places for the night, which was real treat for them to spend the night with friends on a school night! We arrived in Ann Arbor at about 7:30 p.m. and went and had a bite to eat. We arrived at the luxurious University of Michigan Med Inn at about 9:00 p.m.

As some of you know, John has donated bone marrow twice before. He mentioned to me that the worse part of it is removing the large bandage, along with every hair across his lower back and upper back side in a 15" x 8" inch area. He decided that to alleviate that problem this time, he would (or, actually, I would) shave the hair in the area. Not an easy task since he started shaving a full beard at age 15. I'll leave the mental images to you. Suffice it to say that if anyone was walking by the closed door of our room, they would have wondered what was causing the fits of hysteria coming from our side of the door. I started with scissors and ended with an electric razor. I don't know why I didn't think about NAIR. A new discovery after 20 years of marriage, though--John is ticklish in places I hadn't thought of before! (I'm sure he appreciates my sharing this information.)

We awoke at 6 a.m. (actually, we were rudely awakened by a wake-up call) and arrived at the Cancer Center at 6:45 ready to go. We waited quite awhile this morning before anyone came to get us. At about 7:30, the nurse who would be assisting with the extraction came out and told us they were having a "plumbing" problem in the OR (I'm not really sure, in retrospect, that they weren't referring to a heart condition of the surgeon. They were checking to see if they could get it fixed or if we were going to be rescheduled to go to the main out-patient area of the hospital. John was in the main out-patient OR for the first harvest in 1997 and the crowded waiting room was where I first experienced the "The Jerry Springer Show." Let's just say I would have preferred to stay at the Cancer Center where Rachel's bone marrow was harvested. There was only one other patient there that day.

At about 8:30, we were told we would be shifted over to the other OR, which also included a change in the doctor who would be harvesting. I was a little concerned that we would have to wait all day for a spot and that would delay things for Michael, but they were able to get John right in. They had him all hooked up and wheeled away by 9:00.

Apparently, the waiting room had been remodled. I think there were televisions, but I'm not sure if anyone had them on. The entertainment was much more subdued: the nightmares of kitchen remodling of one couple and all the reasons another couple won't be taking a cruise for their 30th anniversary.

Kim came out at about 11:30 and said John was all finished and in recovery. She said she was surprised at the counts she was able to get because of this being John's third harvest. They were expecting to have a more difficult time, but she said they actually were able to draw double what was needed. The courier would have the marrow on its way to Minneapolis by 3 p.m.

I didn't get to go into recovery until about 2 p.m. and by then John was awake and doing great. Once I went back, they reported that they had a small problem with his blood pressure shortly after the surgery. It was dropping a little so they were feeding him more IV fluids. I guess the IV line was pinched, so he was getting deydrated. Once that was discovered, his pressure went right back up without the need to medicate him. The only repercussion were the trips to the bathroom.

We left the hospital at 4:30 and arrived home at about
5:45 p.m. He's a little tired, but otherwise feeling really good. He hasn't even had the need for pain medication or Tylenol and is watching the Detroit Pistons as I'm typing.

It's a piece of cake, people! I don't know why more people aren't doing it. I believe that, with 4 billion people in the world, everyone has a match somewhere. They only need to be discovered. Unfortunately, it sometimes takes a disease hitting close to home before we actually make an effort to do something about it. A little girl named Stacey, who died in 1992 at 6 years old, is what hit close to home for us. Her parents will never stop missing her, but they now know that others were given a second chance because of her courageous battle with leukemia.

We count it a privilege to be able to be part of the second chance for Tracey in Littleton, Colorado, for Rachel and now for Michael. While we may never understand the reasons why people, especially children, are stricken with life-threatening diseases, we are given opportunities to make a difference. Whether we talk about those opportunities or actually do something about them is up to us as individuals. John and I simply chose to serve the Lord Jesus: "What you did for the least of these brothers of mine, you did for me." (Matthew 25)

This has been a blessing beyond words, and we highly recommend becoming a part of it. Don't wait too long. Your recipient may already be waiting.

The Lord bless you and keep you. The Lord lift His countenance upon you and give you peace. The Lord make His face to shine upon you and be gracious to you. Amen.

Michael, Rachel, Jackie and Mel--we will be continuously praying! Love to you all,

Lisa and John

Sunday, May 23, 2004 11:32 PM CDT

** UPDATE 5/24/04 @ 10:45 a.m. = John is out of surgery and doing fine. The marrow will be sent by plane around 3:00 p.m. E.S.T. to MInnesota**

Michael’s day started off a little bumpy today, well yes he had a few breakouts of hives which is a reaction to one of the medications that he receives (I apologize that I can’t seem to keep track of the names of all the medications that Michael is receiving, he has at least 4 IV bags running constantly along with several others that are dispensed throughout the day) the doctors counteracted the hives with benadryl and hydrocortisone.

They have also been counteracting his spikes of high blood pressure several times a day which is also a side affect of two of the medications that he is receiving.

He also had a bad bout of nausea and vomiting which unfortunately is a side affect of the chemo-therapy and radiation treatment he received this week, it was a bit more of a concern for us as he had also vomited blood.

Michael was doing better as the day progressed and a long afternoon nap brought his energy level up a bit to complete his homework.

Michael and family called John Maxwell today to wish him well in his surgery tomorrow and to thank him again for the gift Michael will be receiving from him in less then 24 hours from now. It is such a different experience going into transplant this time compared to Rachel’s transplant knowing who the bone marrow is coming from, it is very difficult to describe the feelings that we all have and is too overwhelming to put into words but I think you all know what I mean. How do you begin to thank someone for the gift of life??

There a common miss conception of what a bone marrow transplant incurs, allot of people think that it is an invasive surgical procedure for both the donor and the recipient, as I did until three years ago when I was here for Rachel’s transplant. I will do my best to give a brief description of the procedure but I am sure that my brother will do a much better job updating everyone tomorrow.

John will undergo surgery tomorrow (Monday) morning to extract the marrow from his hip bone, this is a one day surgery procedure in which John will be discharged from the hospital on Monday and will be at home recovering for a few days. We are hoping that John will be able to give his perspective of the procedure on one of the future web site updates. The bone marrow that is extracted from John in Michigan will then be flown to Minnesota; it will then be processed here in a lab to extract out the cells that are needed for Michael. Michael will most likely receive the transplant late on Monday (Rachel received hers at 11:30 pm); the transplant will be received via IV, to my surprise the bone marrow is a small (approx 1 cup) of a clear liquid. I anticipate that that IV bag will look differently to us this time now that we know the man who donated the marrow. Michael’s vitals will be closely monitored throughout the transplant of the marrow which from what I recall took about 30-45 minutes. It is amazing to think that this procedure which I have described as somewhat uneventful can have such amazing results and can save Michael’s life. We can not find enough words to describe how truly thankful we are to Mr. Maxwell and to the millions of other donors who have or will donate their marrow.

Please keep Michael in your prayers as he receives his transplant on Monday and over the next few critical weeks as we watch for the marrow to engraft. Thank you for all of your love and support.

Love,

Auntie Suey

Saturday, May 22, 2004 9:26 PM CDT

*HAPPY 8TH BIRTHDAY JACKSON MAXWELL !!


This web date is brought to you from Nurse Rachel

Hi everyone. Mike’s doing great. He was playing games with me and Aunty Suey all day. Today was his last day of chemo and his blood pressure went up afew times during the day. Maybe it was that he was playing video games too much our just the medicine. Yesterday we painted his windows. The inside one has a giant Captain America, and the outside one says Michael’s Room with a picture of Spider-Mans head. He really liked these paintings.

Michael’s transplant is Monday and we are excited about this. I also met 2 other girls that are on the same floor as Mike. Their names are:
Lakota www.caringbridge.org/mn/laplafcan
and
Janelle www.caringbridge.org/canada/janelleredekop . They are really nice and I enjoy talking to them. Please keep them in your prayers with Mike.



Love,

Rachel

Friday, May 21, 2004 9:22 PM CDT

Good evening, this is Michael’s Auntie Sue filling in as a substitute writer tonight as Jackie is filling in as a substitute teacher for Rachel and Mel is filling in as a substitute nurse taking care of Michael tonight, thankfully other nurses will be on staff to oversee his care as well and administer his medications.

Michael is doing well; he is on day #3 of chemotherapy, only one more day of chemo to go!!

Michael has been progressing in his treatment as anticipated, his platelets did drop today from 17000 to 11000 and he received a transfusion of platelets to keep his platelets above the critical 10000. His blood-pressure also was a concern today as it was above the parameters that the doctors had set and they quickly medicated him to bring this in line. Michael’s appetite improved slightly over yesterday and he was thrilled to have a ham and cheese sandwich for lunch which he gobbled up like a little turkey so he could keep his energy level high to play his favorite Spiderman video game.

Michael is in very good spirits and has not loss his sense of humor at all and kept us all entertained today with his antics, jokes, impersonations and perfect comic timing that he possesses. A good example of this is when today he got ill while he did his mouth care (I will explain what this is below) and lost his lunch, not more then 1 second after he vomited he quickly announced to all of us in his adorable voice “ham and cheese” and we all laughed, including Michael, he bounced back from this short bout of illness within minutes and was assisting Rachel and I in painting a large Captain America on his hospital window. In case you haven’t picked up on it yet, Michael is a huge superhero fan; to me he is a superhero and an inspiration to us all!!

As I mentioned above Michael has a mouth care routine that he must complete 4 times a day, this is a procedure that all transplant patients must do before and approx 4 weeks post transplant to prevent bacteria/germs in the mouth and hopefully decrease the amount of mouth sores he will receive as a side affect from his chemo treatments, this entails a thorough cleaning of his cheeks, roof of his mouth, teeth and tongue with a gigantic swab dipped in a mixture of salt water and baking soda followed by a swish and spit routine.

We are all anxiously awaiting his bone marrow transplant on Monday. We are trying to enjoy these “good days” as much as we can, the next few weeks are going to be the most challenging for Michael (and all of us that are close to him). I recall from Rachel’s transplant how quickly things changed and these “good days” seemed so far away.

Please let Michael know you are rooting for him by signing the guestbook or sending a get well card to the address listed below.

Love,

Auntie Suey

Thursday, May 20, 2004 9:48 PM CDT

This will be a short update tonight folks because I’m very tired. I had hospital duty last night with Michael. As you know he is on Day # 2 for his chemotherapy. First off let me tell you he is doing very well.

He is given most of the chemotherapy drugs through I.V.’s. So he has anywhere from 3 to 7 I.V. bags hanging off his I.V. pole at one time. Some of these bags are just filled with potassium solution. These are just fluids to help speed the chemo through his body. The whole idea behind the chemo is they want the chemo to enter his system, attack his immune system, and leave the body as soon as possible. As everyone knows the chemo drugs are highly toxic and can damage his organs and kidneys if it remains inside his system too long. So the potassium is added to help flush his system.

Well as one can guess if you start filling someone with lots of fluids they have to get rid of it often. So Michael is going to the bathroom about every 30 minutes. This is not as simple as it sounds. He is attached to the I.V. pole with 3 to 7 different clear plastic tubes/lines that are connected to the central line in his chest. (This line of tubes looks like a bunch of Christmas tree lights all tangled together). So we have to unplug the I.V. pole from the outlet, wheel it across the room to his bathroom being careful not to run Michael or his tubes over. After business is taken care of, Michael has to be taken out of the bathroom over to the sink in his room and thoroughly scrub his hands because of the toxic chemo that could be in his urine. Then we wheel the pole and Michael back to his bed and get him settled and plug the pole back into the electrical outlet for the I.V. pumps to work. As you can image this simple process can take a while. Michael is a great sport about it and is trying his best. The pole is just too big and heavy for him to manage himself.

At night we must wake him up every 1 to 2 hours so he can use the bathroom. They don’t want an “accident” and have him lying in the bed for hours with the chemo on his skin. So as everyone can image you don’t get a good night of sleep at the hospital getting Michael up all the time. But I’m not complaining because it means that his kidney functions are working and the chemo is being flushed through like it is suppose to be.

Michael was wide awake today and you couldn’t tell his sleep had been interrupted so many times. We all got a very nice surprise when my sister Sue arrived at the hospital a few hours ahead of schedule. It was great seeing her and Michael and Rachel were very excited to see their favorite Aunt. She got to spend time with them and hang out with us.

*I have posted new pictures in the album of Michael’s room and a few things. Enjoy

Love,

Mel

Wednesday, May 19, 2004 9:22 PM CDT

Day -5

Mikey had a better day today. He woke me up at 6:00am this morning and was hungry. That was a great sign to me. He hasn't eaten much in the past two days so it was great to see his apetite come back a little.

After breakfast we spent the morning playing games and watching movies. He started his chemo around 10:00am this morning and he seemed to handle it well. They do give him a continuous drip of naseau medication so he doesn't get sick. They also give him continuous fluids so his kidneys flush out the chemo quickly. So right now he is up about every 20 minutes going to the bathroom. That is great for him, because that means his kidneys are working well, but not for Mel who is sleeping there tonight. He will probably be up most of the night walking Mikey to the bathroom (Thank god Mel is a night owl). His IV pole (which we have named Big Bob) is over a foot taller than Mikey and has several IV pumps and bags on it, so there is no way he could push it to the bathroom himself. This will go on several nights as they want the chemo to go in and do its job, then leave the body. If his kidneys do not function properly they would have to give Mikey medicine to make him go to the bathroom. So we are very glad his kidneys are working properly.

Michael will have 3 more days of chemo. He will probably start feeling the effects later in the week. Also, his hemoglobin was 8.2 today so they will probably give him a red cell transfusion tomorrow.

Well, that's about it for now.

Please pray for all the other kids on the transplant floor. They are all amazing!

Love Jackie

Wednesday, May 19, 2004 10:05 AM CDT

Well to say the day was a long one is an understatement. Michael and I survived our first night at the hospital. It was a good night and his fever broke during the night on Monday.

Tuesday morning was different. Jackie and Rachel arrived around 6:30 a.m. and Michael wasn’t feeling well. His temperature started going back up before the scheduled radiation treatment. They didn’t feel that this would effect the treatment at all.

So at 7:30 a.m. we went with Michael down to the first floor of the hospital to the radiation oncology section. The radiation is one of the toughest parts of the whole transplant process to do. It is not physically difficult for the patient; it is emotionally and mentally difficult for the parents. It is difficult because of the short and long term effects. Some of these are the hair loss, radiation sickness, possible cataracts in his eyes within 5 years and also sterilization. There are probably a few more effects that I’m missing but I think you get the point. Once these machines start to work it changes everything including his and our futures.

First I’ll describe the setting. Michael is taken into this very large room and made to lie on the floor. (I’ll explain this part later). There are red lasers that are used to mark the exact spot where he must lie so the radiation hits his entire body. The radiation is used to start killing off his marrow/ immune system. There is a very large machine that I can only describe as looking something like a large microscope. (Michael would be placed on the glass slide portion of the scope). After several measurements are taken of his chest area he is positioned on his back with his arms and legs folded a certain way. He looked like a little yoga instructor the way they had him folded up. We then had to leave the room down a hallway and out to the main control center. The very large steel doors to the room are shut. These doors look just like bank vault doors. After they are shut the red warning lights of high radiation in progress start to flash above the door. When these doors closed it is very difficult because you know what is about to happen. To me this is the point of no return because you want to run into the room and scoop up your child and protect them. You want to take them home and make them safe and forget the nightmare everyone is living. But you can’t do this. You have to coach your child to lie perfectly still while they shoot high radiation through his body. Once this process starts everything changes because now his marrow / immune system has to be brought down to zero. The last four years we have been trying to keep his immune system stabilized and as high as possible now it is the opposite for a week until the transplant.

The machines are turned on for 10 minutes and he received his first dose of high radiation. There is a camera and speaker at the main console so we can talk to Michael and watch him. They also pipe music into the room for him to listen to. Michael was in no pain and there is nothing to watch as he laid there. Michael surprised the techs and did a great job of not moving at all during the treatment. After the first 10 minutes, the treatment was stopped, the doors opened and Michael had to be flipped over to his stomach. After several measurements and folding him back up into a frog shape we had to leave again. The doors were sealed and he received another 10 minutes of radiation. After he was done, he had to wear a special mask over his face so he wouldn’t breathe in any foreign germs. We took him in a wheelchair back up to his room on the forth floor and he was able to remove the mask once we were inside his room.

For those of you that remember Rachel radiation process on April 28, 2001 things were a little different this time. When Rachel went through the process she was taped into a stretcher in a sitting position to receive the radiation. Michael was made to lie on the floor under the machine. The reason for the change is because of a brand new process they are trying. It is called Thymic Shielding. We were told that Michael is the third Fanconi Anemia child to ever undergo this new process.

The thymus process in everyone’s body is located below your sternum and extends upward into the root of the neck. It is very small and difficult to find. The theory is that if this area is not totally destroyed by the radiation than it could help the immune system recover faster. So to shield the Thymus they use a small lead block custom built for Michael to place on him during the radiation. Last week he had to go to the radiation department for the measurements and calculations. Also when he underwent his C.A.T. scan they tried to get the exact spot and calculations as to where his Thymus is located. They sent the exact measurements of his Thymus to the hospital’s machine shop where they custom built a lead shield for Michael. This is then compared to the x-rays and CAT scan measurements for an exact fit. This shield was placed on top of a Plexiglas box Michael had to lie under during the radiation treatment. The theory is that when the radiation is turned on the lead shield on the box will block the exact portion of his body containing the Thymus. They had to take several measurements of his body and marked his skin with markers to the exact spots on his front and back. If the calculations or shield were off then his marrow wasn’t completely exposed to the radiation and his marrow could reject the new bone marrow. Sorry for the long winded explanation but it is a new process and I was trying to explain why it was different from Rachel’s.

The rest of the day had its share of ups and downs. Once we got back to the room Michael became sick and his fever came back. His was throwing up and his fever spiked up to 102.5. They gave him some anti-nausea medication which made him very sleepy. He threw up a few more times and slept most of the day away. The doctors felt that his fever on Monday was just from the surgery and this new fever was from the high radiation he received.

By Tuesday night Michael was feeling a little better and was actually able to eat a little food. Jackie spent the night with him and I returned to the apartment with Rachel for the night. Getting sleep was pointless but I tried anyways.

We spoke with Michael a few minutes ago and he was feeling better. The staff was just coming into the room to start his IVs of chemotherapy. So Rachel and I are leaving for the hospital in a while.

Thanks for checking in with us. We are hoping to get a computer in Michael’s room today so we can read the guestbook entries to him and keep everyone updated. :>)

Love,

Mel

Monday, May 17, 2004 9:03 PM CDT

Day -7

Well, let me tell you that today was a very long day. It started with our alarm going off at 4:00 a.m. After getting about 2 hours sleep we had to get up and get ready for Michael's surgery. We had to pack all his belongings in the car so he could take them to the hospital for his stay. We were on the road by 5:00 a.m. (with Mikey smiling as usual). We arrived at the OR at 5:45 and his surgery for his hickman was at 7:45.

When they took Michael to the OR they said the procdure would take about 45 minutes. Well, after about 1 1/2 hours, we were getting pretty nervous. Even Rachel was pacing the waiting room. The doctor did finally come out and tell us everything was fine and Michael was in the recovery room.

After recovery he was admitted to the BMT floor of the hospital. We had to fill out tons of paperwork and they took more blood from him for all kinds of tests. After that they did say that we could go to the apartment for a few hours. We were surprised to hear that, but we did take advantage of it. We were able to go to the apartment because Michael did not need any IV medicines today. We were able to enjoy a home cooked meal and I even make chocolate chip cookies for the boys tonight at the hospital.
Mikey was very tired today and was not his usual happy self. Hopefully tomorrow he will feel more like himself.

After dinner we went back to the hospital and set up Michael's room. We brought his own comforter and sheets to make the room a little more like home. Rachel also colored some superhero pictures for him to hang on his wall.

Well, when Rachel and I were about to leave the aide came in and took his temperature. Well, guess what? He had a fever already...101.1. That means they have to put him on heavy duty antibiotics to fight off any infection he may have gotten. The doctors are not sure if there is an infection or if it is a post-op fever. They will keep him on these antibiotics until the fever breaks. They will also do blood cultures to see if an infection is brewing.

Tomorrow is a big day also.....total body radiation. I feel this is one of the hardest days. This procedure does not cause Michael any immediate pain. But once he has radiation there is no turning back. (Not that we have a choice anyway). Radiation just makes it so final.

For radiation Michael has to lay perfectly still on his back for 10 minutes and on his stomach for 10 minutes. It doesn't sound long, but when you are watching your child lay in a dark room all by himself, with a huge machine over his body, this seems like a lifetime. So, I can honestly tell you that tomorrow will be a touch day on all of us.

On Wednesday, Thursday, Friday and Saturday he will receive his chemo. His transplant is still scheduled for Monday, May 24.

As you may have noticed on the top of the webpage I put the number -7. This number means today is 7 days before transplant. We will countdown every day until transplant day, which is day 0. After transplant we starting counting up (day+1, +2 etc.) If everything goes well the doctors should let us come back to Connecticut around day +100.

Well, that is it for now. I am exhausted and going to bed. Rachel and I have to be at the hospital by 6:45 a.m. tomorrow morning so we can be there for Michael's radiation.

Love Jackie

Sunday, May 16, 2004 10:49 PM CDT

Well the day has finally arrived. To say we are apprehensive is an understatement. The constant question of “what if ” goes through our minds every few minutes especially when Michael was packing his belongings for the hospital tonight. We moved into our apartment two weeks ago as a family and now Michael won’t be here for at least a month. Actually all four of us won’t be at the apartment together for at least a month. Jackie and I will rotate staying overnight with Michael at the hospital and also taking care of Rachel.

Monday morning will be an early one. Michael is very excited because he thinks getting up at 4:30 a.m. is an adventure. We have to be at the hospital at 5:45 a.m. so Michael can undergo the preoperative tests and have his central line surgery at 7:45 a.m. As I mentioned the other day the central line is a small clear plastic intravenous tube that is surgically placed inside his chest. The tube runs up inside of him into his jugular vein. A portion of the “line” is left outside of his chest allowing access to two tubes. This way Michael can receive his medications and have blood drawn without having to use a needle in his arm each time. The central line will remain in Michael for at least 100 days. If all goes as planned it will be removed shortly before we leave Minnesota. (We weren’t as lucky with Rachel’s central line. It wasn’t removed until after we returned to Connecticut. It had caused some infections and had to be removed.) The central line will limit some of Michael’s activities such as swimming but he understands the process and the importance of having the line.

He was very happy yesterday when he had last injection of GCSF. This is a medication we have had to inject into his thighs every other day for the last 3 years. The medication helped to stimulate his body to produce white cells and boost his immune system and fight off infections. Now that he will be hospitalized the GCSF will be given to him through the central line.

After Michael’s central line surgery he will admitted to the 4th floor of the hospital. This floor is for bone marrow transplant patients only. One section is for children the other for adults. The children’s section is a large square consisting of 14 individual rooms around the square. There are two nurses’ stations in the middle of the square. Each room has a special air filtration system to keep the rooms as sterile and as germ free as possible. The doors must remain closed so the filters work properly. There is very limited contact with the families in the other rooms because of all the doors having to remain closed. Michael will have to remain in this room for approximately 4 or 5 weeks or longer depending how everything goes.

We will write with Michael’s room number and other information once we get settled.
We would like to thank everyone for their well wishes in the guestbook. When something like this affects your lives on a daily basis you realize the important things in life. It certainly helps to have the support of your friends and family.

Love*

Mel

Friday, May 14, 2004 9:12 AM CDT

On Wednesday we had a consultation with the doctor from the Infectious Disease Unit at the hospital. It sounds bad but it wasn’t. The doctors meet with us and reviewed Michael’s medical history and the medications he is on now before transplant. They also tell what to expect from all the medications he will be on during and after the transplant. Some meds he may have to take for up to a year or longer after the transplant to fight off infections and possible bone marrow rejection. The doctors also cover the foods and activities that Michael will have to stay away from. Some of the foods are yogurt and blue cheese (due to bacteria) and can’t be outside when the grass is being cut or play in dirt (spores and other germs). There is a list of a few others but it just comes down to common sense and trying to keep his “new” immune system germ free and allow it to become stronger. Well I’m probably getting ahead of myself here. First he has to have the bone marrow transplant.

Yesterday Michael was able to call his first grade class back in Connecticut and talk to his classmates. He was very happy about this. Thank-you Mrs. Moser and class you made his day.

Also yesterday a local bike shop loaned us some used bikes to use for the summer. Unfortunately the weather isn’t great. It has been has been cold and rainy (right now it is 44 degrees). We were looking forward to doing some bike riding this weekend as a family. We are hoping that after Michael’s transplant, doing some local bike riding will inspire him to get outside. This will build up his muscles and after being inside the hospital for a month or so, mentally it will be a nice change and lift his spirits.

As of right now (and the schedule changes constantly) we have a few days off before Michael is to be admitted into the hospital on Monday. He will have a central line surgically inserted into his chest and jugular vein on Monday before he is admitted. I will cover the procedures in upcoming updates.

I can tell you that the upcoming web dates will be written by Jackie or I (and some other guest writers) because our daily routine will be changing. One of us will be staying with Michael each night so our family will be spilt in half for the next month or so.

Thanks for checking up on us and please sign the guestbook. It lifts all of our spirits : >)

Love,

Mel

Tuesday, May 11, 2004 9:02 PM CDT

Well Mother’s Day on Sunday ended on an interesting note. While having dinner we saw the weather change from a bright beautiful sunny day into a very dark and windy one within about 15 minutes. The televisions started warning of possible tornados in the Twin Cities area. At one point the weathermen were showing there were 5 different possible tornados in our area being reported. It started raining very hard and the storms lasted most of Sunday night.

Monday morning the news stations reported that the winds had been over 75 M.P.H. with 2 inches of rain coming down within one hour. The good news was that there were no actual tornados in the area but strong winds and “wind funnels”. A few broken tree limbs and some blown off roof shingles were the only damage we saw in the area. It did bring back memories that this is tornado season in the mid west. I remember when Rachel was in her hospital room and we had to take storm precautions while another tornado warning / storm went through the area by the hospital.

The rest of Monday was a little easier. We had a 9 a.m. meeting with one of the doctors about all of Michael’s tests results. So far it appears that all of Michael’s studying has paid off. He has passed all the tests with flying colors. Okay maybe it wasn’t that easy but they were very happy with all of the tests results so far. The doctors did stress that no two bone marrow transplants are alike and even though John is the same donor the outcome isn’t guaranteed to be the same. I learned over 4 years ago that nothing in life is guaranteed :>)

We spent the rest of Monday doing something fun before Michael’s admission next week. The kids wanted to go to the indoor playground at the local library. We invited our new friend, Abbey Stuart and her parents to go with us. Abbey also has Fanconi Anemia and will be undergoing her transplant at the same time as Michael. If you would like to check in on Abbey her web site is www.caringbridge.org/ut/abbeystuart Rachel, Michael, and Abbey had a great time playing and laughing at the playground for the afternoon while we talked with Abbey’s parents. Everyone had a great time and we all quickly realized how much we all have in common.*

Today was a long day back at the hospital for more tests. This involved Michael having an I.V. tube inserted into his arm for half the day. It was used to draw blood from his arm at certain timed intervals. It is called a glomerular filtration rate test (aka GFR). They were checking the function of his kidneys. So the first blood draw was at 8:10 a.m. We then had to wait around until 10:10 a.m. for more blood to be drawn, then wait 40 minutes for the next blood draw, wait 40 minutes and then another blood draw and then ….well I think you get the point. Lots of waiting, lots of blood draws. Sounds like a great time huh? We finished that up around 12:30 and then it was off to the bone marrow transplant clinic for …………………………. you guessed it- more blood draws !! :>) I’m not sure but I swore I saw a vampire or two lurking around the corner of the hospital today. In the clinic they drew 6 more vials of blood from Michael and removed the I.V. tube. He was done for the day. I think the only reason they stopped was because he had no blood left.

Actually he did great with all the tests and had plenty of energy for the rest of the day. His blood counts were okay also. His platelets were up to 20,000, his white count was 3.9 and his hemoglobin was 10.9

Tomorrow morning back to the hospital for more consultations. The story continues………


Thanks for stopping by

Love,

Mel



(and to our neighbors I apologize for the speeding truck the other day. I don’t know how she got her license back –again!!!)

Sunday, May 9, 2004 12:36 PM CDT

*This web date interview is being brought to you from the sunny state of Minnesota by Michael*

Hi everyone I really miss you.

On Friday my Dad & Mom took Rachel and I to the Mall of America. We had a great time because we got to go to Camp Snoopy. It is a large amusement park inside the mall. Some of my favorite rides were a giant trampoline, the mini roller coaster (Kate’s favorite- hahaha). There were two new rides there. A Sponge Bob Square Pants ride and a new roller coaster. Rachel and I loved the Sponge Bob ride but we didn’t go on the new roller coaster.

One of favorite places in Minnesota so far has been the indoor playground we found near the library. We love the library because it is open on Sundays and has a lot to do. The playground is in the basement of the library building. They have a lot of things to do inside the playground. There is a big punching bag near a slide and I like jumping onto it and swinging on it. There are also ropes that Rachel and I use for slides.

I miss everyone in my 1st grade class. My Mom is going to call Mrs. Moser this week and see if it okay if I call my class and say hi to everyone. I’m tired of all the hospital tests I have to do but my Mom and Dad said it is okay because we only have one more week of tests before I go into the hospital.

Okay I have to go play games with my sister. I miss everyone.

Love Mikey


Note from Dad:

Michael is doing well. He is handing all of the tests better than we are. He is happy all the time. In 7 years I can honestly say I have never seen him in a bad mood. He is the type of boy who wakes up with a smile and goes to bed the same way. This hasn’t changed even with everything he has to undergo. He is very easy going and understands that he will be in the hospital for a long time. At this point we are trying to do a lot of fun family activities with him because he will be restricted once he is in the hospital and once he is discharged. The weather here has been great so we are trying to spend a lot of time outdoors while we can.

Thanks for checking in on us and we hope everyone had a great Mother’s Day. We have a meeting with the doctor tomorrow morning to discuss Michael’s tests results so far. We will keep everyone posted.


Love,

Mel

Friday, May 7, 2004 9:23 AM CDT

*This webdate is brought to you by Rachel live from Minnesota:*

Hi everyone, I’m out here in Minnesota because Mikey needs a bone marrow transplant. Yesterday we went to the hospital for a couple of tests. The test was a Pulmonary Function test. This is where they check your lungs and breathing. After that we had to see the social worker. I told the social worker that I would walk around and talk to kids about my transplant.

Once we got home we went to the Central Park and there is a huge indoor playground. Mike and I had a great time. There are 4 slides. 2 slides where very small and there was 1 medium one. Then there was 1 really big one that when you go down its pitch dark. Today we are going to the Mall of America. This mall has about 520 stores and 4 floors. Guess what else? There is a giant amusement park called Camp Snoopy.

Mike and I are doing okay and want to say hi to Mrs. Moser’s and Miss Eng’s class. We miss everyone.

Love,

Rachel

Wednesday, May 5, 2004 9:21 PM CDT

Thank you to everyone for their phones calls and leaving messages in the guestbook for Michael he loved every one of them. They certainly made the day brighter.

We arrived at the hospital at 7:30 a.m. for what we thought would just be a few hours for his bone marrow biopsy. Well a few hours was not in our “schedule”.

First let me explain the bone marrow biopsy procedure. The short version is that Michael is given an I.V. in his arm, knocked out, undergoes a 15 minute surgical procedure. This procedure involved him lying on his stomach and the doctors using a hollow tipped instrument, similar looking to an ice pick, to go into the small of his back and remove a small “plug” of his bone marrow from his pelvis. The small piece of marrow is examined for several things including leukemia clones. The hole from the procedure is very small and doesn’t involve any stitches. Michael is bandaged up and shipped off to the recovery room. We were then allowed into the recovery room and waited for him to wake up from the medications.

This whole procedure took several hours and Michael was awake around 10:30 a.m. But he wasn’t fully out of his medicated state. He was dizzy and kind of listless for a while. A check of his blood counts showed they were low. His platelets were at 16,000 (they were !7,000 on Monday) all his other counts had also dropped. The doctors thought it would be a good idea to give him a red blood transfusion and a platelet transfusion.

The red blood transfusion took two hours to complete and finished around 2:00 p.m. The platelet transfusion only took an additional 45 minutes. So now it is almost 3:00 p.m. and we have spent the day in the hospital instead of celebrating Michael’s birthday. It was a beautiful 80 degree day outside and we were itching to get out of the hospital.

Did I say itching? Probably a really bad choice of words on my part because Michael had a severe reaction /rash to the platelet transfusion. This is a common reaction to this type of transfusion though Michael has never had a reaction before. There was some discussion about admitting him into the hospital for observation. He was given some benadryl through his I.V. to counteract the reaction and was discharged from the surgical ward around 4:00 p.m.

Rachel was a great help today taking care of Michael. She got him his lunch and made sure he was comfortable in his bed every few minutes. Michael was quick to catch onto all the extra attention he was receiving and was quite funny at one point with Rachel. He could not use his arms because of the I.V. in one arm and the blood pressure cuff around the other. He wanted some more grapes that he was eating for lunch and asked Rachel to feed to him. Of course she didn’t hesitate and started feeding him grapes!! It was pretty funny. She is going to be a big help with Michael this summer. We did make it to Fridays tonight for his plate of nachos with cheese and he was very happy.

We have more consultations and tests tomorrow. Today was a very long day and didn’t turn out as we had expected but Michael didn’t mind and that is the important thing in a 7 year olds eyes. : >)


*Love,

Mel

Tuesday, May 4, 2004 7:48 PM CDT

This web date is a little overdue so please bear with me. I meant to write last night but we were all very tired and to top it off there was a computer problem.

First off we would like to thank Mary Lou for writing the web dates the past few weeks and keeping everyone updated. Oops did I say the past few weeks? It sure feels like weeks but has actually been 9 days since we left Connecticut. Thank you Mary Lou for all your help and support :>) (I’m sure she will be writing more updates in the future for us)

I have posted some photos from our trip last week in the photo album for everyone to see. We had a great time seeing Niagara Falls and visiting with the Maxwell family.

We arrived here in Minnesota on Friday and spent the weekend getting settled into the apartment. It was very strange being back in Minnesota. It actually felt like we had never left for 3 years and that we were “home” again. I’m sure this sounds strange but we are more comfortable so far with our surroundings. We know the area, the highways, the hospital, and some of the staff. We don’t have that “where the heck are we” feeling when we are trying to find our way around the Town or the hospital.

Yesterday was a strange day. It was very bittersweet. The reason we were happy was because it was Rachel’s 3rd year anniversary for her bone marrow transplant. It was also the day that Michael started his hospital work up week to start his transplant. Like I had mentioned, this past weekend we were busy getting settled into the apartment but Sunday night reality hit as to why we were here. Of course the same question keeps going through my head “can we be lucky twice and have two children with two successful transplants?” This same question has haunted me for the past 4 years but with us being here in Minnesota it is more frightening. We do take comfort in the fact that John will be the donor for Michael and his marrow worked so well in Rachel. But of course yesterday everyone at the hospital kept reminding us that no two transplants are the same.

Yesterday at the hospital was filled with all types of tests for Michael. We were up at 6 a.m. and at the hospital for blood work at 8 a.m. After draining 10 vials of blood from Michael we were off for consultations with the doctors, an EKG and chest x-rays, consultations in the radiology / oncology sections. The rest of the day was filled with more meetings and more consultations with the nurse coordinators and the central line specialist. The central line will be surgical inserted into Michael’s chest / jugular vein on/ about the 17th so he can receive medications and have blood drawn through the line.

The original schedule we had for this week listed the central being inserted into Michael’s chest / jugular vein tomorrow. Well tomorrow, May 5th is Michael’s 7th birthday. We didn’t think he needed the central line before he was admitted into the hospital. The staff agreed with us and changed the date of the surgery. That was the good news for the day. The bad news was that Michael is scheduled to undergo a bone marrow aspiration on his birthday.

Today was filled with more tests: ultrasounds of his liver, heart, an echocardiogram, and a full C.A.T. scan of his chest and sinus areas. Michael was a great sport during all the poking, prodding, and tests. He was very calm and followed all the doctors’ instructions for all of the tests. He didn’t like drinking the dye for the CAT scan. (The dye made his organs more visible).

So tomorrow we are up early for a trip to the hospital for Michael’s surgery. It will be his 7th birthday and he is starting it off with a biopsy. Not the best way to spend one’s birthday. The biopsy is being done to make sure there are no leukemia clones starting in his marrow – so it must be done. The surgery / procedure should take a few hours and then we are taking him out to celebrate. His only wish was to go to the local Friday’s Restaurant and have a plate of nachos with cheese to himself. That is all he has talked about for months so we will be granting his wish (along with a few presents)

So we hope everyone has a great Cinco de Mayo and we will update everyone on Michael’s surgery tomorrow.

Thanks for checking in.


Mel

Saturday, May 1, 2004 6:50 AM CDT

On Mel & Jackie's porch yesterday, my daughter found a package. I told Mel & Jackie about it last night when we spoke. They told me I could open it. I can't say how happy I am to be able to share the article from Today's Christian that Beth Wehman wrote. Beth interviewed them in 2002 when The Hardy's & Maxwell's first met. It goes like this:

***********************************************************
Stacey's Legacy

From somewhere deep inside his soul, a fountain of "whys" flooded John Maxwell's heart. The small casket at the front of the church held the body of John's cousin, Stacey.

The leukemia didn't care that she was only 6 years old or that she had just started her first day of kindergarten. John would of done anything to save his little cousin.

John vowed never to forget her death. God was convincing him to make a decision that would ultimately change his life. He decided to be added to the National Bone Marrow Registry. He could no longer save Stacey, but possibly he could help others.

A single call at work suddenly brought to reality his newly made promise to Stacey. John called his wife Lisa immediately afterward. "Honey, I've been chosen," he exclaimed. "What now, they want you to be a soccer coach again this year?" Lisa asked. "No, I've been chosen as a donor," replied the busy young father of three. "I'm a match. They want me to donated my bone marrow."

A MATCH MADE IN HEAVEN
In 1998, John Maxwell (who is not the famous paster-turned-leadership-expert of the same name) realized that he had begun a new journey. Because of Stacey's death, God had arranged "bone marrow matches made in heaven" that only Maxwell could supply.

His first donation would go to a 54 year old woman in Colorado. As John laid in a hospital bed being prepped for the donation process, he suddenly realized the magnitude of his decisions. Unknown to John, the woman at the other end of the process was eager to see her son graduate from college. She wanted to participate in the upcoming marriage of another son and also hoped to live long enough to become a grandmother. The sacrifice for John was a day off work and mild discomfort to save a woman's life. The process boggled John's mind. How could something this easy be so important to another person?

Early the next morning, John entered the operating room and was given full anesthesia. When he awoke from the procedure, John looked toward heaven and told Stacey, "This one's for you honey."

The National Bone Marrow Registy requires a year of confidentiality for both the recipient and the donor after donation. John knew in his heart that a woman he may never meet was fighting for her life. This stranger seemed to control his thoughts as he returned to his normal routine. He began to pray regularly for her health-and her soul.

John realized that many people refuse to join the National Registry because of the unknown fears accompanied with donating bone marrow. He wanted to assure people of the simplicity of the procedure. John contacted the United Way and asked them if he could speak to people about joining the registry. Soon, John began another mission in honor of Stacey.

The woman from Colorado had one of her wishes come true when she finally met the man who had saved her life. Flying to John's home near Flint, Michigan, Tracy Brainard not only bonded quickly as a friend of the family, but John's kids soon became her surrogate grandchildren.

John continued his speaking engagements in support of the National Bone Marrow Registry when suddenly another call interrupted his life.

RACHEL AND 'GRACE'

John had no idea about the complicated lives of the Connecticut family with whom he would soon become intimately connected. But once again, he was a willing-and-able donor.

Mel and Jackie Hardy's 6-year-old daughter, Rachel, was suffering from a disease called Fanconi Anemia. Because of the illness, she had developed myelogenous leukemia. A recent bone marrow aspiration revealed the leukemia clone cells, and a bone marrow transplant was her only hope.

Remarkably, John's bone marrow matched another needy person. This entered him into a pool of only 303 people internationally that have been able to donate bone marrow to more than one person. There is less than 0.1 percent chance of being a donor for more than one patient. John's life-giving cells would soon be going to a girl the same age as his cousin Stacey.

Rachel was required to undergo several days of chemotherapy prior to her bone marrow transplant surgery. Following her third day of chemo, Rachel's dad started to think about all that could go wrong with his daughter's upcoming procedure. He also realized the importance of the mystery man from Michigan. He prayed that the man wouldn't change his mind at the last minute, and he thanked God for this man's willingness to help strangers. John and his family decided to send along a small gift to the unknown little girl needing his healthy cells. They purchased two stuffed Beanie Babies and a pewter pin angel. Rachel's parents put the gifts by her bed.

As John's family in Michigan began to pray for this unknown little girl, they decided to name her "Grace" so that they had someone specific to pray for during the next year. Unknown to the Maxwells, Rachel's transplant was successful and her body promptly began accepting the new bone marrow.

John again began speaking with everyone about his experiences after his second donation. His message was clear: "Jesus Christ is the lifeline to heaven. He shed His blood for us, and bone marrow is the lifeline in our lives. Without bone marrow we don't live, and without Christ we don't have eternal life."

John also chose a favorite Bible verse to help him articulate the impact he was having on people's lives. The verse, from Matthew 25 reads, "I tell you the truth, whatever you did not do for one of the least of these, you did not do for me."

GIVING HOPE

After the year of confidentiality was up, John immediately contacted the Hardy family. On July 11, 2002, John and Rachel finally met.

The Hardy family flew to Michigan, and as Rachel got off the plane, John was waiting for her at the gate. John had prayed for this little girl over the past year, but above all he wanted to meet her parents and see the hope in their eyes.

"Word cannot describe our gratitude to John and his family," says Mel Hardy today. The families bonded easily and now the Maxwells and Hardys meet for holidays and spend vacations together.

Today, Rachel is in the third grade, enjoying a full life. Sadly, though, the Hardy's son, Michael who has the same disease that plaqued his sister, will soon need to undergo his own bone marrow transplant.

Fortunately for Michael, he didn't have to wait months and months to find a bone marrow donor. He already has a willing giver who's an identical match, and his name is John Maxwell.
***********************************************************

Chilling isn't it???

Thanks for checking on our favorite people!

Luv,
Mary Lou

Friday, April 30, 2004 10:25 AM CDT

Hi Everyone - I just hung up with Mel. They've arrived safely at their new apartment!! He sounded very tired. They drove 12 hours yesterday and covered 700 miles. They stayed in a hotel last night in the same town they'll be calling "home" for the next few months. Jackie & the kids were at the store buying the necessities they'll need for the apartment.

I have their new address & phone number which I'll post at the bottom of this update.

They'll have internet access tomorrow so Mel will start posting once that's hooked up. Nothing else to report right now.

I'm so happy they've arrived safely!!

Their new address & phone number is:

10191 Grand Isle Place
Woodbury, MN 55129
651-436-2163

Thanks for checking on our favorite people!

Luv,
Mary Lou

Thursday, April 29, 2004 7:45 AM CDT

Hi Everyone - we talked to Mel, Jackie & the kids last night. They've had a wonderful visit with the Maxwell's. They went for a ride in their 1916 Maxwell Sedan, the kids have been swimming (they wanted to get this in for Mikey now before his central line is put in.) The kids played on their trampoline while the adults visited. All in all, they had a great time.

They also spent some time with Beth Wehman and her husband. Beth wrote an article about The Hardy's & Maxwell's. The article in in Today's Christian, the May/June edition. I've read the preliminary, but, am anxious to get a copy of the magazine. Mel & Jackie said it's a great article.

Today they're leaving Owosso, Michigan heading to Battlecreek, Michigan down to Kalamazoo (sp?), then on to Indiana to Chicago, Illinois and possibly to Wisconsin. (I hope I got that right Mr. Mel!!) They'll have to see how they do, that's a lot of driving. They're going to call tonight so our kids can talk. They haven't been able to do that yet because they've been calling late. I know they're all anxious to talk to each other. I've had the pleasure of talking to Rachel & Mikey, they sound great. They were very happy to spend time with the Maxwell Family.

That's it for now. As I said in my last update, they're expected to get to Minnesota tomorrow. I'll be sure to let everybody know when they do.

Thanks for checking and don't forget to sign the guestbook, Mel & Jackie will read the entries to Mikey once they get settled in their apartment.

Mary Lou

Tuesday, April 27, 2004 3:02 PM CDT

Hi Everyone - this is Mary Lou updating today. I talked to Mel & Jackie last night, they called around 10:15 PM to let us know they had arrived safely. Their first stop, Niagara Falls. Mikey got on the phone, you could hear the excitement in his voice! This morning they spent time at the Falls and when they called just a little while ago, they had just arrived in Michigan. They're going to spend the next 2 days with The Maxwell family. Everyone's doing well. They enjoyed the Falls, but could've done w/out the very cold weather in Canada & the snow in Michigan!!! I know they're very happy to be able to spend time with the Maxwell's.

Mel & Jackie wanted to extend a special thank you to all who organized the dance. To Karol "Stretch" Dombek, Gerry Gallo, Kate Melan, Gary Ruchin and Don Skewes - thank you for all your time and hard work. You did a great job!

Also, a special thank you to The Saxton Family for you very generous donation. That was so thoughtful of you. And last, but not least, thanks to all who attended, they truly feel blessed to have such wonderful family and friends.

The plan is for them to get to Minnesota on Friday. Mikey's "work up" week will begin Monday, May 3rd. That week is filled with lots of tests and many trips back and forth to the hospital.

Please keep Mikey in your prayers throughout this journey. I know Mel & Jackie will appreciate it.

Thank you and don't forget to sign the guest book, they love to read the entries!

Mary Lou

Friday, April 23, 2004 5:54 PM EST

Michael went to the Connecticut Children’s Medical Center on Thursday 4/22 for a final check of his blood work. His hemoglobin was 8.4 and his platelets have dropped to 16,000. He is feeling fine and did not need a blood transfusion. The doctors feel that we are going at the right time for his bone marrow transplant. If we wait too much longer his counts would continue to drop and he would start becoming transfusion dependant like Rachel was before her transplant.

Over the past 4 years we have written about the staff at the C.C.M.C. Yesterday was a nice day but also a tough day because they said goodbye to Michael and wished him the best of luck. One very special person is Dr. Nate Hagstrom. He was the one doctor who first suspected the symptoms of the Fanconi Anemia way back in 1999 when Michael was in the hospital. If it wasn’t for Dr. Hagstrom’s keen detective skills our children may have been misdiagnosed. Dr. Hagstrom also had the displeasure on 11/11/99 of telling us how much our world would change. He is a great doctor and a wonderful person. I have posted a picture of him with Michael in the photo album. You will notice that Michael’s hair is very, very short. He had it shaved down because of the chemo / hair loss that he will be receiving next month. We already decided that we are going to paint his bald head red, white, and blue for the 4th of July.

On other news. John Maxwell (Rachel’s bone marrow donor) underwent his physical exam yesterday in Michigan. Everything is fine and John is not pregnant as the rumors have said (just kidding John). John is getting ready to become Michael’s bone marrow donor next month. The physical is just standard procedure. I will be writing a lot more about John and his “gift of life” he has given to others. He is truly a remarkable person.
When he donates his marrow to Michael next month it will be his 3rd bone marrow donation. He saved a woman in 1997 in Colorado and of course Rachel’s life in 2001. If Michael’s transplant is successful, John will be one of six people in the entire world to have donated their marrow 3 times and saved a life. Words can not accurately describe how special John and other bone marrow donors really are. Please go to marrow.org for more info on becoming a donor. I will be discussing this subject in future “webdates”.

Speaking of the John Maxwell story. Some of you may find an interesting story in a magazine called Today’s Christian (former called the Christian Reader). We haven’t seen the article yet but we have read the proofs sent to us over the past 2 years. The article was written by one of John’s neighbors, Beth Wehmande who interviewed us when we met the Maxwell family in the summer of 2002. The article discusses John and the lives he has saved. It is ironic that the piece is coming out just when we are heading back to Minnesota for Michael’s transplant.

I have to keep this update short because we are trying to get packed and getting everything ready for our trip to Minnesota. It is difficult to pack for a trip when you don’t know how long the trip is going to be for. We know if everything goes well it will be at least 4 months before we return. If there are complications it could be weeks or months longer.

We would like to thank everyone for their support along our difficult journey. Your support and understanding means a great deal to us.

Please sign the guestbook it really lifts ours and Michael's spirits seeing all the friends and family "checking in"

Thank you,

Mel

Sunday, April 11, 2004 8:19 PM EST

First the medical news.

Michael has started taking voriconazole, this is a medication that needs to be taken a month before his transplant and for 6 months to a year afterwards. It is suppose to lessen the chances of fungal infections and his body rejecting the bone marrow transplant. The great news is that Michael has learned to take this medication in pill form. Now that might not seem like a big deal but trying to get any child to swallow pills is difficult. As you will remember with Rachel after her transplant she was on approximately 15 different types of medications at one point. Well they are not the best tasting medications and a lot of time she would vomit them up back up and we had to start over again. With Michael accepting pills it should make the after transplant medications a lot easier. Let’s keep our fingers crossed on that one. Actually let us all keep our fingers crossed on a lot of things for the next 6 months or so :>)

On other news:

We would like to thank David Vasquenza and his company WINS For Life for Saturday’s basketball clinic fundraiser. Coach V’s energy and enthusiasm was great to watch with the eighteen kids that enrolled in the clinic. I posted a picture in the photo album of “Coach V” and the children from Saturday’s clinic.

We would like to thank David for all that he has done to make this program a success for kids of all ages. More importantly I would like to thank him for picking up the phone after 22 years and helping out a friend and family. Most people read or hear of something tragic and turn the page or forget about what they heard. David isn’t that type of person and never has been, even way back in school. He is the type of person who gets involved and makes a difference in people’s lives. Thank-you to David and his family for reaching out and making a difference.

Upcoming fundraiser:

On Saturday April 24th from 7:00 p.m.-12:00 a.m. there will be a fundraiser dance at the Rockville Elks Club, 9 North Park Street in Rockville. There will be music, dancing, buffet, a raffle, and a cash bar. This is being sponsored by the Rockville Rotary Club, The Vernon Junior Women and the Vernon Police Union. Donations are $30.00 per person. For tickets contact: Karol "Stretch" Dombek @ 989-8512, Don Skewes at 872-9126 ext 270, Gerry Gallo at frager121@aol.com, or Gary Ruchin @ Ruchgaca@ix.netcom.com

Thank-you for all of your help & support,

Mel

Tuesday, April 6, 2004 12:56 AM EST

Another crazy weekend around here. We would like to thank everyone who made the can and bottle drive a success on Friday & Saturday. Thank-you to all the people who saved up and donated their cans and bottles. A big thank-you goes to all the volunteers who collected, organized, and sorted through the 10,900 cans and bottles. I don’t know if everyone realizes the work that goes into these bottles drives. Every can and bottle has to be sorted by manufacturer. Then a certain amount of cans or bottles has to be counted out and placed into plastic bags. Then the large bags are all transported by trucks and cars to the recycle center for final sorting. It is a lot of work. We greatly appreciate the work done by everyone.

On Sunday the Hair Cut-A-Thon was held at the East Street Salon. It was a great success. A big thank-you goes out to all of the women who volunteered their time and performed over 90 hair cuts in 6 hours. They were: Corinne, Gina, Robin, Roxanne, and Shari. I have posted a picture of all these special ladies with Michael in front of the salon in the photo album section. (Check out the banner in the window = thanks Bo)

This special day wouldn’t have been possible without Shari who organized this event and also the last Hair Cut-A-Thon three years ago. Shari you are truly a special Angel and have always been by our side throughout this entire ordeal. Thank-you. We would also like to thank Robin, the owner of the East Street Salon for hosting the Hair Cut-A-Thon.

A special thank-you and an “I can’t believe he did it again” salute goes to Gary & Robin Gibson from the Manchester PD. You will remember 3 years ago that Gary made a bet with his co-workers that he would shave his head at the last Cut-A-Thon if they donated for the medical fund. Well he did it again. Gary, Robin, and others from MPD raised money for a donation to the medical fund and Gary held up his end of the bargain and had his head completely shaved!!! (Jackie told Gary it is a good thing we don’t have any more children otherwise he would be doing this again.) Thank-you Gary for being a true hero.

We would like to express out gratitude to everyone that attended the Hair Cut-A-Thon. It was very nice seeing so many friends and neighbors coming together to help out.
Thank-you Karen and Carla for making the hour drive to see us before we leave for Minnesota. We can’t tell you how much your support means to us after everything you have been through with this dreaded disease. From the bottom of our hearts – Thank-you.

As we prepare for leaving for Minnesota in three weeks there are still a few fundraisers that people have organized to help Michael.

They are:

This Saturday, April 10th from 9:30 a.m. – 12:00 p.m. there will be a Youth Basketball Clinic at the Vernon Center Middle School hosted by WINS for Life. This is for boys and girls in the area grades 4-7. It is a fun, unique, educational, and inspirational basketball clinic that will feature music, mini-lectures, interactive skits and basketball drills that are creatively cultivated to teach life lessons and basketball skills.
The cost is only $25.00 per student and size is limited to the first 40 students who register. Contact Steve Krajewski at the Vernon Parks & Rec Dept (860)870-3520 to register. Additional information can be obtained from the Director of WINS for Life David Vasquenza at (860) 645-1934 or e-mail “Coach V” at dvazhoop@aol.com *WALK IN REGISTRATIONS ARE WELCOME SATURDAY MORNING*

Next Monday April 12th stop in for a meal at the McDonalds on Hartford Turnpike (Lafayette Plaza – across from the East St Salon) in Vernon between 4 p.m. - 7p.m. The Restaurant is sponsoring a fundraiser for Michael. They have pledged 10 percent of all the proceeds raised during the three hours will go towards a donation for Michael’s treatment. So please pass the word about getting a meal at McDonalds that night and helping Michael.

Still got the munchies? Well there is a bake sale being organized for Saturday April 17th from 10:30 a.m.-3:00 p.m. at the Ellington Pharmacy on Route 83. Bakers and non-bakers needed. Call Lisa Williams at 871-9291 for further details.

And finally on Saturday April 24th from 7:00 p.m.-12:00 a.m. there will be a fundraiser dance at the Rockville Elks Club, 9 North Park Street in Rockville. There will be music, dancing, buffet, a raffle, and a cash bar. This is being sponsored by the Rockville Rotary Club, The Vernon Junior Women and the Vernon Police Union. Donations are $30.00 per person. For tickets contact: Karol Dombek @ 989-8512, Don Skewes at 872-9126 ext 270, Gerry Gallo at frager121@aol.com, or Gary Ruchin @ Ruchgaca@ix.netcom.com

Thank-you for all of your help & support,

Mel

Tuesday, March 30, 2004 12:40 PM EST

Okay let me just start off by taking a deep breath first. It has been a busy weekend.

We started off on Friday and Saturday by celebrating Rachel’s 10th birthday. Yes she is now officially entering birthdays with double digits now. She had some friends sleep over and they all had a great time. I posted a new picture in the scrapbook of the birthday girl.

On Sunday, Michael decided to throw us a little curve and he woke up vomiting. Maybe he didn’t care for Rachel’s birthday cake I made in my Easy Bake oven??? He had a little temp. but nothing that required us to take him into the Children’s Hospital. He got plenty of bed rest and felt better by Sunday night.

On Monday night Jackie and I attended a fundraiser that was sponsored by the Wethersfield Police Department. The W.P.D had organized the event and I must tell you the attendance was outstanding. The event was attended by over 200 people from the law enforcement, fire services, and emergency medical services community. There were Officers from all over the State. A lot of them didn’t know us but came to show their support.

We work in a profession that people misunderstand and only believe what they see on television. Often we only see the bad in people and deal with horrible things. We never get to see the good side of people. Well I can tell you firsthand that Jackie and I are very grateful to all of our extended family of “brothers & sisters” in law enforcement and EMS that attended last night and we saw the good in everyone. You have shown us we are not alone in this situation and when the call goes out to help one of your own you answered that call. Thank-you all.

This special night would not have been possible without the outstanding efforts of many people. Some of these special people (just to name a few) were Mike Connolly, Rich Haynes (VPD), Tom Pentalow, Mark Poisson, Oscar Rivera, and everyone else from W.P.D, the Capitol Region Emergency Services Team, and other Police Departments who sold tickets and attended. We also would like to thank everyone for all of their efforts in spreading the word to the law enforcement community.

We were very grateful to meet Kim Dingwall & Carolyn Aselton and thank them for their support. We can not tell you enough how much your attendance meant to us and our conversation about “what goes around comes around” and paying it forward. You both are very special.
Thank-you all that attended and showed your support.

On the other upcoming fundraisers: I have posted the times for the can & bottle drive for this upcoming Friday and Saturday

On April 2nd & 3rd there is another can and bottle drive at the Windermere School (on the corner of Windsorville Rd & Abbott Rd) in Ellington. You may drop off cans & bottles on Friday from 6 p.m.to 8 p.m. and on Saturday from 8 a.m. to 10 a.m.

This Sunday April 4th there will be a hair cut-a-thon from 9 a.m. to 3 p.m. at the East Street Salon, 91 East St. in Vernon. (The plaza next to the Northeast School –across from McDonald’s). Haircuts for woman are $20 to $25, Men are $15, and children are $12 to $15. No appointments are needed. For details call Shari Corlett at (860) 729-4730. All proceeds will go to Michael’s Medical Fund.

On Saturday, April 10th from 9:30 a.m. – 12:00 p.m. there will be a Youth Basketball Clinic at the Vernon Center Middle School hosted by WINS for Life. This is for boys and girls in the area grades 4-7. It is a fun, unique, educational, and inspirational basketball clinic that will feature music, mini-lectures, interactive skits and basketball drills are creatively cultivated to teach life lessons and basketball skills.
The cost is only $25.00 per student and size is limited to the first 40 students who register. Contact Steve Krajewski at the Vernon Parks & Rec Dept (860)870-3520 to register. Additional information can be obtained from the Director of WINS for Life David Vasquenza at (860) 645-1934 or e-mail “Coach V” at dvazhoop@aol.com

On Saturday April 24th from 7:00 p.m.-12:00 a.m. will be a fundraiser dance at the Rockville Elks Club, 9 North Park Street in Rockville. There will be music, dancing, buffet, and a cash bar. This is being sponsored by the Rockville Rotary Club, The Vernon Junior Women and the Vernon Police Union. Donations are $30.00 per person. For tickets contact: Karol Dombek @ 989-8512, Don Skewes at 872-9126 ext 270, Gerry Gallo at frager121@aol.com, or Gary Ruchin @ Ruchgaca@ix.netcom.com

Thank-you for all of your help & support,

Mel

Monday, March 22, 2004 12:01 PM EST

The pasta dinner was a success and over 250 friends and families attended. It was very nice seeing everyone there. We are sorry if we didn’t get a chance to visit with everyone and say hi, as you know it was a very busy place. “Thank-you all for attending and your support.”……….. I said “Thank-you all for attending and your support!!” (for those of you who were seated in the back of the hall you will understand that joke) :>)

We can not thank everyone enough for all of their help in planning, the donations of time, efforts, merchandise, and pitching in where needed. I would like to list everyone that helped in one way or another but I’m afraid of leaving one person out and causing hard feelings. So we will just leave it as a big thank-you to everyone who helped out. This event would not have been a success without your hard work and efforts. Thank-you very much.

Everyone has been inquiring about the other fundraisers. We have been trying to keep this up to date as much as possible. If you would like to attend we would love to see everyone before we leave.

On April 2nd & 3rd there is another can and bottle drive at the Windermere School (on the corner of Windsorville Rd & Abbott Rd) in Ellington. I will post the times when they become available.

On Sunday April 4th there will be a hair cut-a-thon from 9 a.m. to 3 p.m. at the East Street Salon, 91 East St. in Vernon. (The plaza next to the Northeast School –across from McDonald’s). Haircuts for woman are $20 to $25, Men are $15, and children are $12 to $15. No appointments are needed. For details call Shari Corlett at (860) 729-4730. All proceeds will go to Michael’s Medical Fund.

On Saturday, April 10th from 9:30 a.m. – 12:00 p.m. there will be a Youth Basketball Clinic at the Vernon Center Middle School hosted by WINS for Life. This is for boys and girls in the area grades 4-7. It is a fun, unique, educational, and inspirational basketball clinic that will feature music, mini-lectures, interactive skits and basketball drills are creatively cultivated to teach life lessons and basketball skills.
The cost is only $25.00 per student and size is limited to the first 40 students who register. Contact Steve Krajewski at the Vernon Parks & Rec Dept (860)870-3520 to register. Additional information can be obtained from the Director of WINS for Life David Vasquenza at (860) 645-1934 or e-mail “Coach V” at dvazhoop@aol.com

On Saturday April 24th from 7:00 p.m.-12:00 a.m. will be a fundraiser dance at the Rockville Elks Club, 9 North Park Street in Rockville. There will be music, dancing, buffet, and a cash bar. This is being sponsored by the Rockville Rotary Club, The Vernon Junior Women and the Vernon Police Union. Donations are $30.00 per person. For tickets contact: Karol Dombek @ 989-8512, Don Skewes at 872-9126 ext 270, Gerry Gallo at frager121@aol.com, or Gary Ruchin @ Ruchgaca@ix.netcom.com

Thank-you for all of your help & support,

Mel

Wednesday, March 17, 2004 11:20 AM EST

Michael’s trip to the Children’s Hospital went very well. The transfusion obviously helped his counts. His platelets were up to 25,000, his hemoglobin was at 9.9, and his ANC level shot up to 5046.

These are all very good considering how low they have been lately. He returns to C.C.M.C next week for another check of his blood work/counts. We are hoping he will not need any more transfusions for the next 5 ½ weeks before we leave for Minnesota. The more transfusions he has could increase the chances of his body rejecting his new bone marrow during the transplant. We will keep everyone posted.

Yes you read it correctly we are leaving for the land of Minnesota in about 5 ½ weeks. There is a lot to do and not enough time for us to get it all done. So the stress levels are a little high but we will get through this.

On other news we have several fundraisers coming up if you would like to attend we would love to see everyone before we leave.

This Sunday
There is a Pasta Dinner on March 21st at St. Bernard’s Church in Rockville from 4p.m.-7 p.m. Tickets are $10.00 each and children under 6 are free. There will be pasta, bread, salad, desserts, and raffles at this event. For tickets please contact: us, Mary Lou & Jim Harney at jamesharney@sbcglobal.net , or Rich Haynes at (860) 872-9126 ext 258

On April 2nd & 3rd there is another can and bottle drive at the Windermere School (on the corner of Windsorville Rd & Abbott Rd) in Ellington. Michael’s school will be sponsoring several of these drives so please stop by with your cans and bottles for the drive. All of Michael’s classmates are excited about helping out with this fundraiser. When this event was done on March 5th it was very successful and over 16,000 cans & bottles were collected. (There is a picture posted in the photo album). So save your cans and bottles for April 2nd & April 3rd. We will be posting the time when they become available.

On Sunday April 4th there will be a hair cut-a-thon from 9 a.m. to 3 p.m. at the East Street Salon, 91 East St. in Vernon. (The plaza next to the Northeast School –across from McDonald’s). Haircuts for woman are $20 to $25, Men are $15, and children are $12 to $15. No appointments are needed. For details call Shari Corlett at (860) 729-4730. All proceeds will go to Michael’s Medical Fund.

Thank-you for all of your support,

Mel

Tuesday, March 9, 2004 9:49 AM EST

Remember last Tuesday I was taking Michael to the CT Children’s Hospital in Hartford for blood work? We since today is Tuesday it must be hospital day. This afternoon we will be returning for a check of his blood counts.

Last Tuesday we spent the day there while he received a transfusion of whole blood. By the way, why exactly do they call it whole blood? I have never heard of half blood and do they charge you less for half blood? Anyways Michael made it through the transfusion without any problems and he actually had some color in his cheeks for a change.

Today will be a check of his blood levels. They might be low again because he is bruising very easily. I told him with all of the bruising he should quit his part time job as a pro wrestler and concentrate more on his education but you know how stubborn a 1st grader can be.

On a serious note we would like to thank everyone who participated in the can and bottle drive on Friday & Saturday for Michael. Over 16,000 cans and bottles were donated and collected for the cause. This drive wouldn’t have been possible without the great efforts of many volunteers from the Windermere School. Thank-you for all your hard work.

There is a Pasta Dinner on March 21st at St. Bernard’s Church in Rockville from 4p.m.-7 p.m. Tickets are $10.00 each and children under 6 are free. There will be pasta, bread, salad, desserts, and raffles at this event. For tickets please contact: us, Mary Lou & Jim Harney at jamesharney@sbcglobal.net , or Rich Haynes at (860) 872-9126 ext 258

Thanks for your support,

Mel

Tuesday, March 2, 2004 12:58 AM EST

It has been a long day of searching for an apartment in Minnesota (on-line and on the phone) and a doctor’s visit so this will be a short update.

Rachel & Michael both went to the CT Children’s Medical Center today. Rachel has an ear infection and Michael had routine blood work. Rachel is okay and is now on medicine for the infection. The hospital staff called us late and told us that Michael’s counts were very low. His platelets are at 14,000 and white count only came in at a whopping 6.8

So Tuesday Mr. Mike and I will be spending the day at the Children’s Hospital where he will have to get an I.V. tube stuck in his arm and have a transfusion of whole blood. If his platelets don’t go up from this then he will also need a platelet transfusion. We hope this doesn’t happen because platelet transfusions expose him to more antigens and this opens up the door for possible transplant rejection in a few months. One transfusion won’t hurt his system but the more this happens it could affect the overall outcome.

Isn’t life funny? This week we were are all concerned about Michael’s counts being so low when in 2 ½ months we will be praying for his counts to be this high after his transplant. It is all about perspectives folks :>)

Several people have been e-mailing and asking about the upcoming fundraisers for Michael. I will be posting them as they come up.

This Friday night (March 5, 2004) there is a can and bottle drive at the Windermere School in Ellington at 5:30 p.m. Michael’s school will be sponsoring several of these drives so please stop by with your cans and bottles for the drive. All of Michael’s classmates are excited about helping out with this fundraiser.

There is a Pasta Dinner on March 21st at St. Bernard’s Church in Rockville from 4p.m.-7 p.m.. Tickets are $10.00 each and children under 6 are free. There will be pasta, bread, salad, desserts, and raffles at this event. For tickets please contact: us, Mary Lou & Jim Harney at jamesharney@sbcglobal.net , or Rich Haynes at (860) 872-9126 ext 258

Thanks for all your support.

Mel

P.S. We still haven’t received the full results from Michael’s latest biopsy. The doctors are awaiting the results of the cryogenics.

Friday, February 20, 2004 9:35 AM CST

Rachel’s ultrasound on Wednesday went well. We should get the results next week along with Michael’s biopsy.

It was an extremely heavy heart that I tell everyone that Fanconi Anemia has claimed two more Angels this week. Our little friend baby Cade, died on Wednesday (2/18/04) and 16 year old Tom, from Rhode Island died on Tuesday. Both of them were at Fairview University in Minnesota when they passed. Cade had his bone marrow transplant 62 days before he died and Tom was at day 83 after his transplant. We wish to extend our condolences to their families.

We haven’t told Rachel or Michael about Cade dying. They still remember playing with Cade’s older brother, Cole when we were in Minnesota. We are greatly saddened by Amanda’s & Chris’ loss of Cade but happy in the thoughts that Amanda had written about Cade’s passing. She wrote that her two sons are now pain free in Heaven and playing with Tom.

Yesterday in the mail we received the 2004 Fanconi Anemia directory. It contains a listing of almost all the families that are known to have FA worldwide. Under the Connecticut listing there are six known families listed (we are one of them). I was shocked to read that we are only one of the three families that still have our children with us. Sadly with the passing of Tom and Cade I can now say we know more children who have died from this horrible disease then we know children that have survived.


Mel

Tuesday, February 17, 2004 8:47 PM EST

Just a quick update.

Michael had another bone marrow biopsy at 6 a.m. on Monday morning at the Children’s Hospital. He was home later that morning and feels fine. His platelets went up to 25,000 and his hemoglobin was 8.3

We won’t have the other results (the check for cancer and/or leukemia) until next week. The doctors have told that they agree that Michael’s counts have continued to decline and he is going to Minnesota for his transplant at the right time. (Like there is a wrong time to go ????)

Rachel returns to the Children’s Hospital at 8 a.m. tomorrow for an ultrasound test of her liver and kidneys. They are checking for proper functions and any damage / cancer from the medications she was on.

As a side note family and friends are working on putting together several fundraisers to help out with the medical expenses and the move to Minnesota. We will posting information on the fundraisers here for everyone.

Thanks for all of your support :>)

Mel

Wednesday, January 28, 2004 10:09 AM CST

Well folks the news we have all been expecting for the last 4 years has arrived. So I will not belabor getting to the point. Michael will need a bone marrow transplant this summer.

His counts have continued to drop for the last year. On January 19th his platelets were only 16,000. He is scheduled for more counts next week and another bone marrow biopsy in February. Depending on the results of the biopsy, it will determine if his bone marrow transplant (BMT) will be moved up and we will be leaving sooner for Minnesota. Otherwise the plan is that were leaving for Minnesota at the end of April. Michael is scheduled to begin his hospital work up week (which I affectionately refer to as hell week) on May 3rd. This date will be the 3 year anniversary for Rachel’s B.M.T.

So that is that. I won’t write of all the emotions that we are feeling about this dreaded news. I will post more updates, results, etc. as they become available. So as they say in TV land “stay tuned folks the best is yet to come”

Mel

Sunday, December 21, 2003 12:01 AM CST

We want to wish everyone Happy Holidays

Just a quick webdate on Michael's lastest counts from earlier this week. His platelets continued to drop a little. They were 23,000. His hemoglobin was 9.0 and the white count was 10.9

We knew from his last biopsy that his platelets probably wouldn't rise back up so we are keeping a close eye on those.

Well that's all for now folks. We hope everyone in your families are doing great and has a great holiday.

Love,

The Hardy Family

P.S. Say some extra prayers for our little buddy Cade. He is in Minnesota undergoing his BMT. Things are not going so well for him right now. You will remember his Mom & Dad, Amanda & Chris, from when we met them while we were in Minnesota with their son, Cole. They have now a son named Cade who needs your support. His web site is http://www.caringbridge.org/nc/cadesmith/index.htm

Wednesday, November 26, 2003 2:58 PM CST

Happy Thanksgiving To Everyone.

We just got the results from Michael's biopsy and everything still looks the same except for the cells making plateletes....they have decreased. We were not surprised to hear that because his plateletes have not gone up in a while. This time his plateletes were 24,000 and his hemoglobin was 8.7 He will go again for counts on December. Until then he is doing fine and still enjoying all his activities.

Rachel had her counts done too and her plateletes were 350,000 with a hemglobin of 14. She goes back in 6 months for counts again. Actually they will probably be done in Minnesota when she has to go back for a 3 year check-up.

So we are hanging in there and just going to try and enjoy the holiday season. We have many things to be thankful for.

Love Jackie

Monday, October 27, 2003 6:04 PM CST

Hi Everybody:

I know it has been a while since we updated but not much has changed. Mikey had his counts done on Sept. 29th and they are about the same. His hemoglobin was 8.8 and his plateletes were 24,000. He goes again on November 10th for his 3-month biopsy and counts again.

Rachel goes on November 11 (that is the day they were diagnosed 4 years ago) to get her counts done. It will feel weird being there on that day.

Besides that everyone here is doing good. The kids are enjoying school and keep us busy with all their activities.

We will update again after Michael's biopsy and Rachel's counts.

Love Jackie

Wednesday, September 17, 2003 6:20 PM CDT

Hi Everyone:

Sorry for the lag in updates. The kids keep us very busy with all their activities.

The kids started school and love it. There are some new photos posted in the album also.

Michael's biopsy results came back and they were fine. Their was no change from last time. He will have another biopsy in November.

He goes for counts on September 29. Until then hopefully everything will be quiet.

Remember "NO NEWS IS GOOD NEWS".

Love Jackie

Wednesday, August 6, 2003 1:32 PM CDT

Hi Everyone:

Just wanted to let you know that everyone is doing okay.

Rachel had the last of her immunizations last week. She is all caught up and doesn't need anymore until 6th grade. Her next counts will be done in November.

Mikey had his counts done and they were okay. His hemogloboin was 8.2 and his plateletes were 27,000. The hemoglobin is low for him but hopefully it will go up next time. He is scheduled for a biopsy on August 19th and he will get counts done again at that time. We will let you know what they are and his biopsy results when we get them.

We hope everyone is enjoying their summer.

Love Jackie

Friday, July 11, 2003 4:36 PM CDT

Hi Everyone:

Just wanted to give you a quick update and tell you everyone is doing good. The kids are enjoying their summer.
Mikey goes for counts on July 28 so we will update then with counts.

On the show 48 Hours on Saturday, July 12, at 8:00pm on CBS there is suppose to be a segment on Fanconi Anemia. We don't know what it is about, but we wanted to let everyone know in case they were interested in watching it.

That's it for now. We hope you are all having a nice summer.

Love Jackie

Friday, June 6, 2003 8:18 AM CDT

Hi Everyone:

Sorry for the lag in updates. With softball, T-ball and karate we are rarely ever home.

Rachel and Mel's trip to Minnesota was successful. All of Rachel's tests came back normal and the doctor is very pleased with her progress. This summer she has to get the rest of her immunizations and then she can start getting bloodwork every six months instead of every three. She was very excited.

Mel did talk to the doctor about Michael and she feels that we should plan to go to transplant within the next year. His counts are still holding but they don't want to wait too long. Right now he is in the low risk category and at anytime he can get leukemia and be put in the high risk category. It is a balancing act. You don't want to go too soon (because the transplant is not always successful) but you don't want to wait too long and put him in a high risk situation. We will be talking to our doctor here in Connecticut to determine the best time to go.

Michael's recent biopsy results came back and they were the same as three months ago and so far there is no sign of leukemia. He will have another biopsy in August.

Michael has been out of school yesterday and today. He woke up yesterday with a fever and sore throat. I took him to the clinic and they think it is a virus and has to work it self out. They did test him for strep (that is going around the school)and I will have his results today.

Even though he has a fever his counts were good. His plateletes were 33,000 and his hemoglobin was 9.7. Hopefully they will stay up and this virus will be short lived. He goes back for counts on June 19. (The last day of school).

We will keep you updated as things change. Remember "no news is good news."

Love Jackie

Thursday, May 22, 2003 7:21 PM CDT

Hi everyone:

Mel and Rachel flew to Minnesota this morning for Rachel's 2 year BMT check-up. They arrived safely and have already visited the Mall of America.

Rachel will have all her tests tomorrow, including a bone marrow biopsy. This will tell us if she is still 100% donor. We believe that all the tests will come back fine. We will have the official results in a couple of weeks.

Rachel did have counts done on Tuesday and they were good. Her Hemoglobin was 13.9, her ANC was 3562 and her plateletes were 345,000 (can Michael borrow a few). She also had two more of her immunizations. She should be all caught up on those by the end of the summer.

Michael's results also came back from his biopsy and they were the same as 3 months ago. That is good news...that means that his marrow is not getting any worse. His counts went up also....his Hemoglobin was 9.3 and his plateletes were 25,000. "Keep up the great work Mikey."

Besides all that everything around here has been "normal". The kids keep us very busy and with the end of school approaching there is excitement in the air.

Michael and I are just hanging out this weekend and we can't wait for Sunday to come (Mel and Rach come home).

Have a nice weekend!!!!!

Love Jackie

Tuesday, May 6, 2003 6:59 AM CDT

Happy 6th Birthday Michael
Happy 2nd Birthday Rachel


This was a very busy weekend for the Hardy clan. On Saturday we celebrated Rachel's 2nd year BMT Birthday (May 3rd) and Michael's 6th Birthday (May 5th).

We started the day out at Chuck e Cheese's for Michael's friends. Boy, did they have a ball. We had the party at 10:00 am and they had the place all to themselves. They loved it.

That afternoon we had a small cookout for family and friends and they celebrated all over again. Both kids had a wonderful time.

It is truly amazing to see how far Rachel has come in two years. She asked me to make her a cookie cake to celebrate her birthday. She ate tons of it. If any of you remember, on her transplant date two years ago we also got her a cookie cake and she couldn't even take a bite of it because she did not have an apetite. Sue, Mel and I ate it all. It was nice to see her munching on it all day this time.

Mikey will have his 3-month biopsy on Thursday. We will let you know how he makes out. He will also have his counts done.

We will write soon.

Love Jackie

P.S. We have changed the title to the webpage to Rachel and Michael since we are usually updating about both kids now.
The web address is still the same

www.caringbridge.org/page/rachel

Wednesday, April 16, 2003 8:00 AM CDT

Happy Spring

Michael went for counts yesterday and they seem to be going up. His hemoglobin was 9 and his plateletes were 26,000. Hopefully this is going to be a good trend for a while. He will go back in a month At that point he will have his 3-month biopsy (already) and his counts done. We will let you know the results of those when we get them.

Both kids are enjoying the nice weather finally. They keep us busy with karate, softball and T-ball. They are always on the go. They love it. They both got their report cards last week and are doing very well in school.

In May, Rachel and Mel will be flying to Minnesota for Rachel's 2 year transplant check-up. Can you believe it has already been 2 years. It's unbelieveable.

Hope all is well with everyone. We will write again soon. Remember "No News is Good News."

Love Jackie

Thursday, March 27, 2003 10:19 AM CST

HAPPY BIRTHDAY RACHEL!!!! We just wanted to let everyone know that Rachel turned 9 yesterday. She has come so far these past few years and we are very proud of her. She has been celebrating all week. Her last party will be a sleepover this Friday with a few friends. We plan to eat, watch movies, do hair and nails. A great time will be had by all (even Mom and helper Mikey).

Well, it seems like Mikey is finally on the upswing. He was sick all last week. He had some kind of virus. We took him to clinic on Monday morning for counts and to have a check up. (He had diarreha for a full week - it finally stopped on Monday). His counts were lower again. His hemoglobin was 6.8 and his platetes were 21,000. After a lenghty discussion with the doctor we decided to give him a red blood cell transfusion. The doctor said he would feel much better after that. He also ran some other tests on him to check for some specific viruses and they came back negative, so we assume he just had a virus that took a long time to run its course. Mikey finally went back to school yesterday and is doing fine. We will go back on April 7 to check his counts again. Pray that his counts will rise again.

Well, I have a story to tell everyone about Mikey and yes I am bragging. Everyone that goes to the clinic knows that everytime your child gets bloodwork or an IV they get to take a prize from the prize box....When Mikey got his bloodwork done he picked out a Captain America coloring book for his prize. (Eveyone that knows him, knows that he is very particular about his prizes and takes his time and thinks it through very thoroughly before choosing one). Well, a few hours later when we decided to give him a transfusion he had to get an IV in and get stuck again with a needle. As usual he did that with flying colors. Because he was so good the nurse took a few toys out of her "private" stash for him to pick through. One was a helicopter, one was a coloring kit and the other was a Lego Bionicle. He thought about what he was going to choose for about 2 hours (a transfusion takes about 4). Then he said, "Mom, I want the Bionicle, and I am going to give it to Rachel for her Birthday." Well, I almost broke down into tears. Here is this 5 year old kid hooked up to an IV pole for hours, feeling lousy, and he thinks about his sister. Well, I was so proud of him I had to tell all the nurses and doctors and anyone else that would listen.

After his transfusion we were getting ready to go and his nurse told him she was so proud of him for giving his prize to Rachel that she gave him the helicopter too. Well, after a rough week and day he was beaming.

When we got home he couldn't wait to tell Rachel that he got her a present. He gave it to her on Tuesday morning. He couldn't wait until Wednesday. I also heard through the grapevine that Rachel told everyone at the bus stop and at school what Mikey did.

We hope everyone is enjoying this nice weather.
Keep Smiling!!
Love Jackie

Tuesday, March 18, 2003 8:40 AM CST

Hi Everyone: Sorry we didn't update earlier but it has been a crazy couple of days.

Mikey went for counts on Friday (3/14). His plateletes went up to 24,000 (that is a good thing) but his hemoglobin went down to 7.3 (that's a bad thing). The doctor doesn't like to see the hemoglobin under 8. Usually they would tranfuse a patient with a hemoglobin as low as Mikeys. But since transfusions may affect the outcome of a transplant they like to hold off. So the doctor told us to come back Monday and get re-checked. So we planned to go after school on Monday and do that. If his hemoglobin was below 8, we were going to go back on Tuesday and get a red blood cell transfusion (minimum 4 hours).

But nothing stays on track here. Sunday night at 9:30 Mikey woke up vomiting. Well that changes the whole plan. I took him to clinic first thing Monday morning. They did his counts and they were even worse than Friday. His hemoglobin went down to 7 and his plateletes went down to 20,000. Now the doctor thinks the counts are lower because of the virus. He gave Mikey a thorough check-up (which also revealed an ear infection) and decided still not to transfuse him. He seems to believe that once the virus is out of his system his counts will rise again. So, we will go back next Monday to check him again. Hopefully everything will be on the rise.

He is still out of school today. He has a slight temperature and still does not have his full apetite back. One good thing is that he is not vomiting anymore. So hopefully by tomorrow he will feel better.

We will update next week with his counts....Pray for high numbers.

Love Jackie

Monday, March 3, 2003 7:05 PM CST

UPDATE: We just got the rest of Michael's biopsy results and they are good NO LEUKEMIA!!!! We will test again in 3-4 months.


Hi everyone:

We just wanted to let you know that the kids are doing okay. They have finally gotten over the bug and are improving.

Mikey had his counts done last week and they went up a little. His Hemoglobin was 8.4, his plateletes were 18,000, and his ANC was 2263. Part of his biopsy results came back and Dr. H. said his bone marrow doesn't look any worse than it did 4 months ago so he is optimistic that his counts will go up slowly. We go back in two weeks for a re-check.

Everything else is back to normal...Kids are back to school and feeling good. Hopefully the warm weather will come soon so they can play outside. They are going stir crazy with all the cold weather.

We will update again soon.

Stay Warm.

Love Jackie

Wednesday, February 19, 2003 2:55 PM CST

Quick update: It's now Thursday morning. Mikey has finally stopped throwing up but has a temp. of 100 now. Hopefully it is from lack of fluids yesterday. We will keep watching him and go to clinic if it gets any higher. We will keep you posted.

Jackie



Wednesday Feb. 19, 2003

Hi everyone:

Just wanted to let you know that Mikey had his biopsy today. We won't know the results for a while. He has been sick all day, hopefully just from the anesthesia. He had his counts done and they weren't that great: His Plateletes are 16,000 and his Hemoglobin was 8.8. He will get re-checked next Thursday.

Rachel had her ultrasound yesterday and everything was fine. She also had her counts done and they were good. Her plateletes were 290,000, Hemoglobin was 15 and her ANC was 1900. She goes back in 3 months to get checked.

We will keep you updated.

Love Jackie

Friday, February 14, 2003 4:03 PM CST

HAPPY VALENTINES DAY!!!!!

Hi Everyone: It has been a while since we updated because it was pretty quiet around here until last week. The dreaded BUG hit the Hardy household. It started last Friday with Rachel getting a fever and continued with the vomiting, sore throat, coughing, etc. Of course we can't leave Mikey out of the story. He woke up Monday morning with the fever, etc. So this week we visited the clinic three times for evaluations and counts. It finally looks like the kids are kicking the virus and returning to their old selves again.

The doctor didn't find it necessary to do counts on Rachel but he did do them on Mikey. They are pretty low because of the virus he is fighting. His Hemoglobin is 9.5, his ANC is 957 and his Plateletes are 15,000 (this is the lowest they have ever been). Hopefully once the virus is out of his system they will go back up.

February vacation started today (even though Rachel's and Michael's started Monday), so they have the week to recover fully before school starts up again.

Next week's agenda is Tuesday I take Rachel in for her yearly ultrasound of her liver and kidneys. She has to have this because of the steroids she was on a few years ago. The steroids can cause liver masses so she has to have it checked every year. At that point she will also get her counts done.

On Wednesday, Michael will have his bone marrow biopsy done to check on the condition of his marrow. He will also get counts done to see if they are moving up. We should get results from the biopsy in about a week. We will update when we get them.

We are planning to have a quiet (and hopefully healthy) week off.


Take care.

Love Jackie

Tuesday, December 31, 2002 at 08:21 AM (CST)

Happy New Year!!!!

The Hardy clan wants to wish everyone a Happy and Healthy New Year.

The kids are doing good. They went for counts on Christmas Eve (and got spoiled rotten by the nurses and doctors).

Rachel's counts are great: Hemoglobin 14.9, Plateletes 346,000 and ANC 3600.

Michael's counts are still holding: Hemoglobin 10.2, Plateletes 26,000 and ANC 7200.

Rachel goes back in 3 months for counts and Michael will have his 3 month biopsy done at the end of January.

This holiday season has been very exciting for all of us. Rachel's donor John and his family visited us from December 26 until the 30th. We all had a ball. We already miss them all very much. Thanks John, Lisa, Christine, Chloe and Jackson for everything. We love you all. Can't wait to see you again.

Per several requests the pictures have been updated.

Love Jackie, Mel, Rachel and Michael

Friday, November 15, 2002 at 03:07 PM (CST)

Hi Everyone:

We got Mikey's results last week from his bone marrow aspiration and everything still looks the same. There is no leukemia and his bone marrow is still working about the same as three months ago. That is good news. He will get another bone marrow aspiration in January.

We also got his counts done on Tuesday and they were okay. His hemoglobin was 9.8, his ANC was 6649 and his plateletes were 31,000.

Rachel is doing fine. She goes for counts again in December.

We are happy being the "boring" Hardy family at this point.

We want to wish everyone a Happy Thanksgiving!!

Love Jackie

Sunday, October 27, 2002 at 09:19 AM

Hi Everyone:

Not much going on here. The kids are busy at school and all their extra activities.

Michael had his biopsy done last week and everything went fine. We should have some results next week.

His counts were done on October 15th and his counts are still around the same: Hemoglobin 10, Plateletes 30,000, White 3.8, and ANC 1240. He is still holding his own. Let's hope for a virus-free winter.

The kids are excited for Halloween. Rachel is going to be a "doctor" and Michael is going to be Batman. We will post some pictures next week of them in their costume.

We will let you know Michael's results when we get them.

Have a safe and spooky Halloween!!!!!!!

Love Jackie

Wednesday, September 18, 2002 at 06:52 PM (CDT)

Hi Everyone: I know it has been a while since we updated, but no news is usually good news.

The kids started school and they both love it. Michael is in kindergarten and Rachel is already in 3rd grade.

Both kids have started soccer and it keeps us very busy.

Rachel and Michael had bloodwork done on Tuesday and both had good counts. Rachel's were: Hemoglobin 13.8, ANC 3113 and plateletes were 304,000. Michael is still holding his own at hemoglobin 9.8, ANC 4956 and plateletes 35,000.

Rachel had four more of her immunizations and does not have to be back at clinic until December. (That is a first for her, ever). Michael will be getting his 3-month bone marrow biopsy in October. We will keep our fingers crossed that everythng goes well again this time. He is on a monthly schedule for his bloodwork.

If all stays quiet, we will update after Michael's biopsy.

Take care.

Love Jackie

Wednesday, August 07, 2002 at 09:23 AM (CDT)

1 year 95 days post transplant

WOW have things changed from a year ago.

Last year at this time we were just getting home from Minnesota. This year Rachel is at The Hole in the Wall Gang Camp. She left last Friday and will return home this Friday. We hear from undisclosed sources that she is really having a ball. She is there with her friend Ashley and they are probably running the place already.

We also went to Disney a few weeks ago and the kids had a ball. Michael saw all his superheroes and was speechless (can you believe it). Mel has posted a new picture of Mikey and his new friends.

We have been busy this summer and the kids are having tons of fun (isn't that what summer is all about).

Enjoy the rest of the summer, school is right around the corner.

Love Jackie

Wednesday, July 17, 2002 at 10:42 AM (EST)

1 year plus 74 days


Our trip to Michigan was great!! We finally met with John Maxwell and his wonderful family. They met us at the airport upon our arrival and we instantly knew there was a bond between all of us. It was heartwarming to see John hugging Rachel and know that he is the reason she is still with us today. Words alone cannot describe our gratitude to him and his family.

Rachel and Michael bonded very quickly to Christine, Chloe, and Jackson. The kids had a great time swimming, jumping on a trampoline, roasting marshmallows, and playing. Jackie and I enjoyed talking with John and Lisa and meeting their friends and families. They were all wonderful and enjoyed meeting Rachel & Michael. They all made us feel very welcomed and part of the Maxwell family. The four days went by too quickly and it was very difficult saying our goodbyes on Sunday morning. We can’t wait for them to visit us in Connecticut.

Of course what would a Hardy trip be without a little stress? Michael developed a high temperature on Saturday afternoon. He also developed a large bump under the skin in his neck and was complaining of the pain from it. He was loaded up with Tylenol and we prayed that his condition didn’t become worse because we were scheduled to fly home on Sunday morning. He slept on the plane rides home and the temp broke when we arrived in Connecticut, saving us a trip to the Children’s Hospital.

On Monday Rachel and Michael had a scheduled appointment at the Children’s Hospital. The doctor said that Michael had another ear infection and that caused the limp nodes in his neck to swell. They also had blood counts done:

Rachel's Hemoglobin 13.8 Michael's was 10.4
Rachel's White cells 8.9 Michaels' was 7.1
Rachel's Platelets were a whopping 312,000 and Michaels' were 29,000
Racehl's ANC was 5420 Michaels' was 3102


Michael’s counts are down a little because he is fighting off the ear infection. But otherwise he is feeling fine and acting his usual crazy self. As you can tell by Rachel’s counts her little “Maxwell marrow” is doing great and everything is well within the normal range. Thanks John :>)


Some of you might have seen the newspaper and televisions stories about John and Rachel. We were interviewed in Michigan by the news stations. The Associated Press picked up the story and the Connecticut papers ran some stories. Some people were worried about how we might feel about the coverage. As everyone knows when the kids were first diagnosed we didn’t want any extra attention on them. We want them to be treated like everyday children. That hasn’t changed and never will.

But what has changed is the focus. It is no longer about our children; it is about everyone else on the “waiting list” for a bone marrow transplant. As everyone who has followed Rachel’s journey through the transplant knows it is not an easy road. I have yet to find one person who will trade places with us. But please take a moment and imagine your child or loved one needing a life saving transplant and there was no one who matched them on the list. Your child or loved one will die without the transplant. What would you do?

Please take a few minutes and click on the National Marrow Donor Program link below or call your local Red Cross office. Find out when and where the next marrow drive is in your area and PLEASE donate. It only takes 2 tablespoons of your blood to get your name on the list. You might be the next John Maxwell and save 2 people’s lives as he already has. (He has also agreed to donate his marrow to try and save Michael’s life). We know of several children who need bone marrow transplants but don’t have a matching donor. They are dying for YOU to get on the list. Please help them.

On a lighter note I have posted new photos in the album of John and Rachel. Next week we leave for Disney World through the Make-A-Wish program. Michael’s wish was to go to Disney World before his transplant. So stay tuned for more updates.


Take care,

Mel

Wednesday, July 10, 2002 at 12:26 PM (CDT)

1 year 67 days post transplant

We are happy to report that everyone at the Hardy household is doing fine.

Michael's biopsy results came back and everything is still fine. He will have another biopsy done in 4 months.

Tomorrow is an exciting day for all of us. We leave for Michigan to meet Rachel's donor John Maxwell. Everyone here and there have been waiting a long time for this meeting. We will be staying in Michigan until Sunday. I am sure Mel will update the pictures as soon as we return.

The kids go for bloodwork on Monday and Rachel will start getting her immunizations again. (She's not too thrilled about that).

Basically, the kids are having a great summer, playing with friends, swimming lessons and just good old kid stuff.

Have a great day.

Love Jackie

Tuesday, June 11, 2002 at 08:25 PM (EDT)

1 year 38 days post transplant

Hi everyone:

We made it through our trip to Minnesota. Rachel was great through all her tests and we were even able to fit in a trip to The Mall of America.

We actually got Rachel's results back today from Minnesota. As told to us by the doctors "They were outstanding". Engraftment continues to be 100% donor cells. Her marrow cellularity is up to 65%. (A child her age with no BMT in only 85%, so she is on her way and should get there in the next few months). There are no funny looking cells or blasts in her marrow. She has the return of her immune system function. She has no signs of chronic Graft vs. Host Disease. Her thyrod hormone levels are in the normal range, so her thyroid gland is doing fine. All in all this was a great visit.

Rachel will start receiving her childhood immunizations all over again over the next year. She will start this in July at her next clinic visit. If all continues to go well she will not have to go back to Minnesota until next year for her 2 year follow up visit.

Her counts were fantastic in Minnesota. Her hemoglobin was 14.2, White Count 6.3 and her little old plateletes were 389,000 (the highest ever).

Now to our little guy Mikey. He is still holding his own. He had his 4 month biopsy today to check his cellularity and to see if he is getting any abnormal cells in his marrow. He did well through the procedure. He will have this done every 4 months to make sure nothing abormal is going on in his marrow. We will not have any of his results for at least a week.

He did have his counts done today also and they are still about the same as last month. His Hemoglobin is 10.9, ANC is 846 and his plateletes are 39,000. Basically he is still holding his own.

Both kids go back to the clinic in July for blood work. Until then we are hospital free (keeping our fingers crossed).

Michael finished school a few weeks ago and Rachel will finish next week. They are looking forward to the summer. We are going to visit Rachel's donor in July and we are also doing Michael's make-a-wish trip to Disney World....so this will be an exciting summer for all of us.

We hope everyone has a fantastic summer.

Love Jackie

Wednesday, May 29, 2002 at 12:05 AM (EST)

1 year plus 25 days


Sorry for the lack of updates. It has been a very busy month. We started off by celebrating Michael’s 5th birthday. If you looked at the photo album you will see that he had a surprise guest. Yes, Batman himself made the party!!! To say that Michael was stunned is an understatement.

The following weekend we were guests at the Hole in the Wall Gang Camp with the Holmgren and Tate families. This is the camp located in Ashford that was started by Paul Newman for kids with cancer and other life threatening diseases. We actually saw Paul Newman at the camp while we were there. It was very nice spending time with the Holmgrens and Tates. The kids had a great time also.

Well the biggest news and most stunning news this month is that we actually talked to an Angel on May 16th. Maybe a Saint would be a more appropriate term but I prefer Angel. This “Angel” is named John Maxwell and he and his family live in Lennon, Michigan. What special feat did John accomplish to deserve the title Angel? Well he saved our daughter’s life.

John called us on May 16th and told us that he was Rachel’s bone marrow donor (and we thought Michael was stunned at meeting Batman), well John is our new Superhero!! To talk with him was incredible and to finally be able to thank him was wonderful. He is truly a special person. He is even more special when I tell you that Rachel is the 2nd person he has saved with his bone marrow. John saved a woman from Colorado five years ago with a bone marrow donation. The woman is doing fine and cancer free.


During our phone conversation I told John about Rachel’s website so he could see a picture of Rachel. I also had to tell him about Michael having Fanconi Anemia. When John found out that Michael has the same marrow type he immediately volunteered to undergo another bone marrow donation to help save Michael. This is more then we could ever ask for and truly shows what a special person John is. We will be speaking with the doctors in Minnesota to see if it is possible for John to become Michael’s donor and what the process is. We look forward to meeting John and his wonderful family this summer.

I will take a brief moment and please encourage everyone to please become a bone marrow donor. John Maxwell is the perfect example of what can be the outcome of becoming a donor. He has already saved two precious lives and will possibly save a third. Can you think of a greater gift to give someone then the gift of life? Please click on the link below for the National Marrow Donor Program to learn how you can become a donor. There are many people including a lot of children who don’t have donors because there are not enough people on the donor list.


On another note for everyone wondering how Rachel & Michael’s counts are. They had their blood counts checked on May 20th. Rachel’s hemoglobin was 13.3, ANC was 8200 and those little old platelets came in at a whopping 273,000. Michael’s counts were: 10.8 for the hemoglobin, ANC 2630, and his platelets were at 38,000.

We are leaving for Minnesota on Wednesday for Rachel’s one year check up and bone marrow aspiration. She will undergo a battery of tests and the aspiration on Thursday and we plan to return home on Friday. We will keep everyone posted on how the trip goes and the results.

Take Care, :>)

Mel

Friday, May 03, 2002 at 07:37 AM (EST)

Day 365 – HAPPY ANNIVERSARY RACHEL


Well, well, well who can believe it has been one year today since Rachel underwent her bone marrow transplant? She is doing GREAT. Her counts are right on track and the marrow has shown no sign of rejection. At the end of the month we are returning to Minnesota for her one year check up and bone marrow aspiration. We expect the tests will show that Rachel is doing very well.

A lot has happened in the past year and we would like to thank everyone for all of their support and understanding. We could not have done it without all of you. We would especially like to extend a heartfelt thank you to Rachel’s bone marrow donor. These words do not adequately describe how grateful we are to him. How do you properly thank someone for saving your daughter’s life? I don’t know the words………..

We are hoping to express our thanks to Rachel’s donor in person someday soon. We have recently signed the required paperwork for meeting the donor. The transplant foundation has regulations where the donor and recipient must wait 1 year after the transplant before they will release the other’s name. We are hoping that the donor will also agree to have his information released to us so we can meet and thank him. All we know about the donor was that he was a 39 year old male with O positive blood. He could be anywhere in the world. (Personally I suspect he may have curly hair because Rachel had wire straight hair before transplant and now it has come back extremely curly after the transplant. Hhmmmm :>)

I have posted a new picture of Rachel in the photo section. Look closely at her eyes and tell me those aren’t the smiling eyes of youth. The picture was taken at her 8 birthday party. We are very grateful we got to celebrate that day with her. Also according to the bone marrow “protocol” May 3rd is considered her “second birthday” because she received the gift of a second life on that day.

This weekend we will also be celebrating Michael’s 5th birthday. (Yes he will be 5 on Cinco de Mayo). Last year Mikey sort of missed out on celebrating his birthday because of Rachel’s transplant and we had to celebrate it in the hospital. So this year we are trying to avoid hospitals. I will post some newer pictures later this week.

Thank you again for your support.


Mel

Tuesday, April 23, 2002 at 11:48 AM (CDT)

Day Plus 355
(10 more days until Rachel's 1 yr. anniversary)

Rachel and Michael had counts done yesterday and both did very well.

Rachel's were: Hemoglobin, 13.6, ANC 3005, and plateletes 319,000.

Michael is still holding his own at: Hemoglobin 10.9, ANC 1026 and plateletes 38,000.

Considering the many exposures to chicken pox and several viruses the kids have been holding up very well.

They had a great vacation last week with the Florida like temperatures here in Connecticut.

We don't have to go back to clinic until May 20th. At the end of May we are going to Minnesota for Rachel's 1 year check-up.

Take care.

Love Jackie

Tuesday, March 26, 2002 at 06:44 PM (CST)

Day Plus 326


HAPPY 8th BIRTHDAY RACHEL!!!!!

The kids are doing good. They had counts last week. Rachel's were great. Her Hemoglobin was 12.5, her ANC was 5000 and her Plateletes were 294,000.

Michael's counts were also good. His hemoglobin was 11.4, his ANC was 5700 and his plateletes were 42,000.

They don't go back for counts again until the end of April.

Last year at this time we were planning our trip to Minnesota. We were very stressed not knowing what the future would hold for Rachel. We are so thankful we were able to really celebrate Rachel's birthday this year. She had a great day (weekend) and is your typical 8 year-old. She is loving every minute of it.

Coming soon...........May 3rd.....Rachel's 1 year post transplant!!!!!!

Take Care
Love Jackie

Sunday, March 10, 2002 at 04:30 PM (EST)

Day plus 310


The kids are doing great. They go back for counts later this month and of course we will keep everyone posted on the results.

It has been a very long journey since the kids were diagnosed in November of 1999. It seems like a lifetime ago. People often ask us how we get through it each day. Our usual response is that everyone could get through with the support of their friends and family. That is how we have made it this far.

I would like to tell you another way we cope with all of the bad news associated with terminal diseases. We do that through the doctors and nurses we deal with. They are truly heroes and perform their jobs as professionals. But the best doctors and nurses are the ones who we have become very close with because they offer the “human touch”. They treat not only the kids but the whole family. We are proud to call them our friends

I would like to tell you about one of these special people. His name is Bryan Clemens. We first met Bryan when we arrived on the Bone Marrow Transport Ward in Minneapolis, Minnesota. He had a very laid back, easy going manner. We chose him to become Rachel’s primary nurse. Michael instantly loved Bryan because Bryan had hunted down a very limited Nintendo game set for Rachel’s room. (There are only a few game sets for the floor) He disinfected the entire set (it had to be sterilized for Rachel’s room) and brought it in the room for Rachel & Michael to play with. He told them to keep it in the room for Rachel’s entire stay. This small token meant a lot to the kids.

During the course of the 4 months in Minnesota, we became very close with Bryan. He would come into Rachel’s room and spend as much time as possible with us. He loved watching Michael play the Nintendo games we had rented at the local Blockbuster Store. Bryan always had a smile on his face. Bryan would always take the time to answer our questions on Rachel’s transplant and the side effects. He was a very big support for two parents who were scared to death and 1300 miles from home.

Bryan loved to tease the kids and make them laugh. He taught them how to fill syringes up with water and use them as squirt guns and make balloons out of latex gloves. You could tell that he truly loved his job and caring for these special children. Bryan and I would talk for great lengths of time about motorcycles, my job, the house he was renovating in Iowa on his days off, movies, and other things.

When we left Minnesota it was very hard to say goodbye to Bryan and the staff at the hospital. We had become close with many of them but Bryan was always very special to us. When we returned in November of 2001, for Rachel’s and Michael’s check ups and bone marrow aspirations, one of the first people we went to see at the hospital was Bryan. He loved to see Rachel with hair and teased Michael about his buzz type haircut. Bryan also had a buzz cut and Michael loved that. Bryan was very happy to see that Rachel was doing so well and he often checked this web site. He had actually signed the guest book a few times. He often sent us e-mails to ask about the kids and let us know how he was doing.

Last Tuesday I was driving to work and he popped into my mind and I told myself I’ll have to send him an e-mail and see how he was doing. I also was going to tell him that we would be traveling back to Minnesota in May for Rachel’s one year check up and we wanted to see him. I didn’t get a chance to send the e-mail. Early on Thursday morning I saw a movie poster for a movie Bryan and I had watched and discussed while in Minnesota. It made me think of him again and reinforced the desire to send him an e-mail on my upcoming days off.

When I got home from work Friday night (3/8), Jackie told me Bryan had died on Thursday of a massive heart attack. Stunned, shocked, and disbelief don’t come close to describing our feelings.

Bryan was 39 years old and leaves behind a 12 year old daughter. He was part of our support system and was one of the few reasons we looked forward to going to Minnesota. (Michael had told us that Bryan was going to be his primary nurse when he undergoes his transplant.)

I have posted a picture of Bryan and Rachel in the scrapbook that was taken on May 22, 2001. You can tell he was a great nurse by his smile and his genuine caring for “his children of the B.M.T. Ward”. I’m happy to have met him but we are filled with a great sadness for having lost a friend.

Rest in Peace My Friend and I know you will be in Heaven playing with all “your kids” from the ward. The next time it rains I’ll be thinking of you and the kids squirting us from Heaven with syringes. Take care - you will not be forgotten and will always be remembered in our hearts.



Mel

Wednesday February 20, 2002 9:36 AM EST

Day plus 292


This is a special webdate brought to you by Rachel herself:


Hi everybody. Our counts were very good from yesterday. Michael’s hemoglobin was 10.7, white count was 9.7, ANC was 5723, and his platelets were 39,000. My counts hemoglobin 13.1, white count was 8100, ANC 5184, and my platelets were all the way up to 338,000.

Now for some even greater news: If Michael’s counts stay where they have been than the doctors believe that we don’t have to go back to Minnesota this summer for his transplant.

I’m doing well I’m off all my medicine except for one medicine that I have to take Mondays and Tuesdays. I also included a new picture of Michael & I with our Aunt Cindy :>)


Love,

Rachel

Tuesday February 12, 2002 10:33 PM EST

Day plus 284

Well, well, well…it has been a long time since the last update. They say no news is good news. Mix that with how busy we have been and throw in a couple cases of bronchitis and next thing you know it is almost a month since the last web date.

The good news for January when we had the flu and bronchitis going around was that Michael and Rachel didn’t get it. (Jackie & I weren’t so lucky) Rachel was sick a few days but nothing serious. She is doing very well and her counts have been great.

Michael had a bone marrow aspiration on January 29th but we didn’t the final lab results until just a few days ago. The news from the doctor was that the Cytogenetics came back were normal. No evidence for monosomy 7. At this point there is no evidence that he is progressing at a fast pace or even at all. He is not close to being transfusion dependent and his ANC is fine and there have been no infections. Therefore, the doctors do not see a reason to rush to transplant. They can't predict when Michael will have another downward turn in counts; it could be in the next 6 months or in the next 12-24 months. So we will wait and see how his counts remain.

We will keep everyone posted. Thanks for checking in :>)



Mel

Monday February 11, 2002 10:56 AM EST

Sorry for the lack of updates folks. I'll work on a new one tonight. It has been very busy.

Mel

Thursday January 17, 2002 8:00 AM CST

Day Plus 258

No More CSA...YEAH!!!!!!!!!!!! Today is a big day for Rachel. She had her last dose of CSA. CSA is the medicine she had to take to help prevent Graft vs. Host Disease. It tastes terrible and she hated it. She was very happy to throw the bottle and syringe away after her last dose. This is a great milestone for Rachel. Now she only has to take an antibiotic on Mondays and Tuesdays. This is alot different from all the medications she had to take in the beginning.

Overall, Rachel is doing well. She had a fever on Saturday and had to be taken to the Emergency Room for blood counts and cultures. They gave her a 24-hour antibiotic and sent her home. By Monday the fever broke and she felt better. It seems that she just had a virus that everyone is getting. Her body was able to fight it off which is a great relief. Her counts were good when she went to the ER. Her Hemoglobin was 12.3 and her Plateletes were 297,000.

Michael had his counts done on Tuesday. His Hemoglobin was 11.6, his ANC was 7060 and his Plateletes were 47,000.

The kids are enjoying themselves by attending school, playing with friends and going to many birthday parties. They are looking forward to when we have some significant amount of snow, so they can go out and play. It is great seeing them have so much fun.

We hope everyone is enjoying the new year so far.

Love Jackie

Monday, January 07, 2002 at 1:19 PM (EST)

Day plus 249


Well we hope everyone is having a great New Year so far. This will be short and sweet. The kids are going very well.

Michael’s counts have been going up by themselves. So let’s hope that trend continues. Rachel had her yearly ultrasound last week. We are awaiting the results of the tests. The reason for the ultrasound is to check for damage to her organs due to the steroid treatments last year.

Some interesting news on Rachel’s blood type: Her blood type has officially changed from B+ to O+. This change (which still amazes me –probably because of the line of work that I’m in and dealing with crime scene and blood evidence) was because of the marrow donor’s blood type. When Rachel had to receive platelet transfusions it was required that she only receive platelets from B positive donors. But her marrow donor had a blood type of O positive. So Rachel’s marrow has now assumed the same blood type as the donor. This is just another great sign that the “new” marrow is still working properly. She has had some bloody noses lately but we are hoping this is just due to the dry air. The doctors haven’t found any reason to suspect otherwise.

The kids return to the hospital for blood counts on January 14th. So we hope the good news continues. I also posted some new pictures in the album for everyone.


Take Care,


Mel

Monday, December 31, 2001 at 02:24 PM (CST)

Day Plus 242

HAPPY NEW YEAR!!

We want to wish everyone a Happy and Healthy New Year.

Even though this has been a tough year, we are truly grateful that Rachel has come through her ordeal with flying colors. We could not have asked for more. We have also made some great friendships along the way and we will always cherish them.

We don't know what next year will bring, but we are hopeful that we will be as lucky as we were this year.

Michael had his counts done today and they were good again. His Hemoglobin was 12.2, his ANC was 1495 and his plateletes were 62,000. We can't explain why his plateletes are good again, but we will take what we can get. Hopefully this is a good sign that is bone marrow is working a little more. All I can say is that this is a nice way to start the new year.

Rachel did not have any blood work today, even though she went to the clinic to visit and show off her new doll she got for Christmas. She does not go again until January 14.

Take care and see you in 2002!!

Love Jackie

Tuesday, December 18, 2001 at 09:48 AM (CST)

Day Plus 229

First of all we would like to wish everyone a Happy Holiday. We hope you are enjoying this crazy time of year. And we would like to also thank everyone for their love and support this past year. We could not have done it without all of you.

We actually have a good update today for both kids. Rachel and Michael both had their counts done yesterday and we were very happy with both.

First, Rachel's counts were excellent. Her Hemoglobin was 11.6, her ANC was 3986 and her plateletes were 294,000. Looking back to last year at this time she is truly a miracle. She does not have to go back to clinic until January 14, 2002.

For the first time in a long time I can also say that Michael's counts were really good. His Hemoglobin was 11.3 his ANC was 11,186 (a little high from his injections so they decreased his injections to 3 days a week) and his plateletes were 68,000!!!! They haven't been this high since March of this year. As you can tell I was a little excited when the doctors called me. That was the best Christmas present we could have ever received. Michael goes back to the clinic on December 31 for more counts. Hopefully they will be as good.

We hope all of you have a Great Holiday and please remember to hug your kids everyday, they are the best present you could ever receive.

Love Jackie

Tuesday, December 04, 2001 at 04:53 PM (CST)

Day Plus 215

Rachel is doing good these days. She is enjoying school very much. It did not take her long to get into the groove of things again.

Rachel does not go back to the clinic until December 17, and she is enjoying that. This is her longest time away from the clinic ever.

Michael had his counts today. They were okay. His ANC was 6920 (thanks to the injections) and his plateletes went up to 41,000. He is doing well with the injections and blood draws. But, I must say it is weird taking Michael to the clinic more often than Rachel.

The kids are enjoying the holiday season and are very excited for Santa to come. Mel has updated the photos with some pictures he took of the kids with Santa at a Christmas party we attended this weekend.

I hope everyone is enjoying this wonderful, but hectic, time of the year.

Love Jackie

Tuesday, November 27, 2001 at 11:02 PM (EST)

Day plus 208


It is with great sorrow that we have to let you know that the disease of Fanconi Anemia has claimed another child. This morning our friend Cole died in his mother’s arms. Even though he is at peace and pain free it doesn’t make it any easier to write these words. Nor does it make it any easier to quell the anger you feel at times for this disease and all pain and suffering it causes its victims and families.

We wish to extend our deepest condolences to Cole’s parents Amanda and Chris. You have done everything possible for your little man. You have shown us the incredible strength you have. You are both amazing and Cole is very lucky to have such strong parents. Jackie and I were very fortunate to have met all of you. I still remember Rachel drawing pictures for Cole when he was in the hospital. She and Michael would then race to Cole’s room to deliver them just to make Cole smile. Those are one of the memories we will cherish of Cole.

At this time we are not going to tell Rachel & Michael of Cole’s passing. We feel that with Michael’s upcoming transplant, it is best that they don’t know the consequences of what can happen.

If you wish to extend your condolences to Cole’s family, click on the link below for his web page.




With A Heavy Heart,


Mel

Wednesday, November 21, 2001 at 04:13 PM (CST)

Day Plus 202

I can't believe we are past Day 200. It only seems like yesterday we were waiting for the big Day 100.

Rachel is doing very good. She had her clinic visit yesterday and all her counts are good. The doctor doesn't want to see her for another month. That is the longest stretch of time away from the clinic for her.

Michael's counts weren't too bad. His plateletes were 39,000 which is about his average. His ANC was 3488. That is up because he receives injections of growth factor every other day.

Our doctor in Connecticut and the doctor from Minnesota agree that Michael should go in for transplant soon. We are now in the process of filling out the paperwork for a bone marrow search. We will probably be going back to Minnesota in spring for his transplant.

Please keep our friend Cole in your thoughts and prayers. He is not doing well. If you would like to send him a note please click on the link below.

We would like to wish everyone a very Happy and Healthy Thanksgiving.....

Love Jackie

Sunday, November 18, 2001 at 1:13 PM (EST)

Day plus 199


Well it has been a very busy week since we returned from Minnesota.

First off a big thank you goes out to Mary Lou for keeping the webdate going while we were in Minnesota. I know first hand that writing these updates can be very difficult at times so it was greatly appreciated :>)

Well I’ll start off with our trip to Minnesota. When we arrived there it felt strange because it felt like we had not left there 3 months ago. We knew our way around area without ever looking at a map. It seemed as though we had only left Minnesota for about a month before returning again.

The week was busy with hospital and clinic visits and a lot of testing. As you know from Mary Lou’s updates the kids did fine during their surgeries. Rachel’s testing went very well and she received the clearance to start attending school again. The doctors are very happy with her progress and she still is not showing any signs of rejecting her new bone marrow.

Michael’s blood counts were not so great. While in Minnesota he had to receive a shot to boost up his part of immune system (the ANC levels). Before transplant, Rachel also received daily injections. Well the time has finally come that Michael now has to receive injections every other day to keep up his ANC. If he doesn’t then his immune system can’t fight off infections. He is a brave little guy but does anyone know of a 4-year-old who would tolerate getting a needle in the thigh every other day? It breaks our hearts every time we have to give him the shots.

His platelets continue to drop but there is no medication to boost the platelets. The only way to currently “boost” them is to receive platelet transfusions. The doctors in Minnesota are not recommending this be done. The doctors have been evaluating the current protocol for transplants of children with Fanconi Anemia and have been suggesting some changes. One of the changes is trying to keep the children from receiving transfusions and the steroid medications for their immune systems.

What do these changes in protocol mean for us? Well it could mean that Michael would have to undergo his bone marrow transplant very soon. It will depend on his counts and if any leukemia cells start to develop in his marrow. So we could be moving again to Minnesota for the Spring. For the immediate future Michael’s counts will be monitored very closely.

We returned to Connecticut last Sunday without knowing the results of all the testing.
While awaiting the test results we did have other “distractions”. Rachel was able to start attending school this week (it was a tremendous boost for her spirit) and I came down with bronchitis. Another distraction (for lack of a better term) was that I was able to go to New York City to “Ground Zero” with another Officer. We assisted the Police Departments there by bringing critical incident stress managers to the site. We met some of the Officers involved in the initial disaster. We also saw some family members along with the shrines built by the families of the Officers and Firefighters killed. It was difficult to see and will always be a part of me. It also reinforced something that I already knew. There are people in this world that have more difficult situations than we face everyday.

The rest of the week was busy with work and Rachel attending school. The doctors from Minnesota notified us that Michael’s bone marrow harvest operation was not successful. His counts were too low to obtain a good harvest of marrow. So this will mean when he has to undergo his bone marrow transplant there will be no “back-up” plan. The transplant will either work or it won’t. The doctors also found some abnormal blast cells in his marrow. It is unknown at this point if it is the start of leukemia cells or just an abnormal test reading from the ANC booster shot he had received the day before his surgery.

In closing I would like to tell everyone about our friend Cole. I had mentioned him several weeks ago. We saw Cole and his parents while in Minnesota. At the time it he was undergoing several test to see if he could undergo a second transplant because the first one failed. Well as of this point Cole has developed leukemia and can not undergo a second transplant. He and his family have left Minnesota to return home to be with their loved ones. If you would like to send a note to Cole and his family his web site is www.caringbridge.com/page/colesmith or just click on the link below. Your support means a lot – Trust me we know this firsthand.


Take care,


Mel

Saturday, November 10, 2001 at 09:00 PM (CST)

Day Plus 191

Hi Everybody:

We talked to Mel & Jackie tonight. They had "an uneventful day today." They went to the Mall of America, the kids went on the rides at Camp Snoopy and had fun. Jackie said they're looking forward to coming home. I can only say we've missed them so much and can't wait for them to come home where they belong.

Not much else to report. We just wanted everybody to know they're doing well.
So the next time you read this "webdate" the Hardy's will be home safe and sound.

Mr. Mel is up next!

Love to all,

Mary Lou

Thursday, November 08, 2001 at 09:15 PM (CST)

Day Plus 189

Hi to all:

Just got off the phone w/the Hardy's.....lucky us!!! The good news is Rachel got the clearance to go back to school probably sometime next week.....boy is she happy!!! Also, they took Rachel off of a couple of her medicine's; the blood pressure medicine and an antibiotic have been removed from the list! She will continue on her immueno suppresant (sp?) drug for another 12 weeks.

They won't have any results from Rachel's tests until next week.

Mikey on the other hand has alot going on. He has to be in the hospital tomorrow at 5:30 AM for his bone marrow aspiration and bone marrow harvest. That'll be an all day affair. They did do counts for Mr. Mike today and they look like this: platelets 36000, WBC 3200, ANC 300. He rec'd. a shot (growth factor) to boost up his ANC. Mel & Jackie found out today that Mr. Mike will have to get shots 3 times a week once they're home due to the fact that his counts aren't doing so well. Mel & Jackie will have more info. to share once they're home.

OK gang, just to let you know there will not be an update tomorrow night because Mel & Jackie won't have any test results until later.

I'll probably update Sat. just to let everybody know all is well in the Hardy world.

Love to all.

Mary Lou

Wednesday, November 07, 2001 at 08:03 PM (CST)

Day Plus 188

Hi Everybody:

We just talked to Mel, Jackie, Rachel & Mikey. Everybody's doing fine. They arrived safely in Minnesota. They don't have access to a computer while they're there, so we'll be updating the website for them.

Tomorrow Rachel is scheduled for her bone marrow biopsy at 8:00 AM. Tomorrow's tests also include a pulmonary function test which is done to check her lung capacity.

We'll be talking to Mel & Jackie on a daily basis, as soon as there is any information to share, we'll update you.

Thanks for checking in on the Hardy's.

Jim & Mary Lou Harney

Tuesday, November 06, 2001 at 07:49 PM (CST)

Day plus 187


Michael had his counts done on Monday. The results were a little better than last week. His hemoglobin went from 10.3 to 10.5, his white count went up from 4800 to 5300, his ANC rose from 364 to 630 (still not in the 1,000 + range but at least it is rising). His platelets went up to 38,000 from 30,000 last week.

Both Rachel and Michael will have more counts done this week in Minnesota. We leave Wednesday morning and return on the dreaded November 11th. The 11th will be the two-year anniversary of when the kids were diagnosed. It is strange how every parent of an ill child can tell you the date and usually the time when they were told the “news”.

A lot has happened in the past two years and we have all come a long way. I know we have a longer journey ahead of us but we get through each day with the support of family and friends. Thank-you.

We will have daily updates posted when we are in Minnesota. It will be a busy week because both Michael and Rachel will be undergoing surgeries and additional tests.


Hang in there and keep the faith,


Mel

Saturday, November 03, 2001 at 05:17 PM (EST)

Day plus 184


Well the meeting with the doctors last Monday wasn’t what we expected to say the least. Michael underwent several audiology tests. The hearing in his right ear has improved slightly but there is still little change in his left ear. This is due to the eardrum being fused to the ear, a common side effect of some Fanconi Anemia patients. We then met with the same doctor we met with last year about this problem. Last year he had recommended that Michael undergo a reconstructive surgery on his ear. Well to our surprise and slight confusion he told us that Michael is too young to undergo the surgery at this time. We asked him why had he recommended the surgery last year? He explained that this must have been a “misunderstanding”. We told him that there had been no “misunderstanding” because he had told Jackie and I the same thing at the same time in the same room. We had told him then that we wanted to hold off on the surgery because we were leaving for Minnesota for Rachel’s transplant.

This time we hope we understood what he told us both…no surgery until Michael is a few years older. Of course when Michael goes back in 6 months for another checkup I’m sure we will be told that he should have underwent surgery last year.

In other news, on Tuesday 10/30/01 the kids had their blood counts done. This was a good news / bad news result. First the good news – Rachel’s counts were outstanding. Her ANC was 4155, hemoglobin was 11.4, and those little old platelets continue to amaze us with the highest reading ever of 303,000 !!! Her creatinine level was 1.0 but hopefully in a few weeks she will get the medical clearance to taper off of the medication that effects these levels and they will return to normal.

Michael’s counts on the other hand were not the best. His ANC was only 364 (anything over 1,000 is good). His hemoglobin was 10.3, and the platelets were only 30,000. So Michael will be making a return trip to the Children’s Hospital on Monday for more counts. If his counts continue to deteriorate then we will have to start looking at either putting him on medications or looking at the possibility of starting the process for his bone marrow transplant. We will discuss this further with the doctors in Minnesota later this week.

Halloween was fun for the kids. We have included some new photos of 2 kids hanging around the neighborhood. One was girl named Dorothy something and her friend Mr. Aluminum or was it Tin Man? Hmmm I can’t remember now.


Have a good one.


Mel

Monday, October 29, 2001 at 10:12 AM (EST)

Day plus 179


Rachel and Michael have been doing very well and enjoying the small break from the hospital trips for the last 2 weeks. On Saturday, Rachel was able to take part in the South Windsor Police Department’s “Hog Jog”. It is a fun 1-mile race in which all of the children receive a medal for completing the race. Rachel has participated in this race before but was unable to last year due to medical reasons. She has talked about doing the race this year and we even did a little “pre-training”. She completed the race and was very happy to have accomplished this. I have included a photo of her with her racing medal in the photo album. Yes, I have finally updated the photo album: >)

In other news, we are going to the hospital this morning for a hearing test for Michael. After the tests we will be meeting with the Doctors about doing the reconstructive surgery on his eardrum. Last year we were told this would involve a 5-hour surgery on Michael’s ear to rebuild the eardrum and hopefully he will be able to hear out of his left ear. So we will see how everything goes today.

We are also getting ready to go back to Minnesota in a week and a half. We will be there for 5 days. Rachel will have her 6-month check on her bone marrow and insure her body is not rejecting the donor’s marrow. We are also hoping she will get the medical clearance to start attending school again.

While in Minnesota, Michael will also be undergoing a bone marrow harvest. (I guess that is appropriately titled since it is the Fall time). He will undergo an overnight stay at the hospital and they will remove a piece of his bone marrow and freeze it. It will be saved for when he has to undergo his bone marrow transplant. If the transplant fails then the Doctors can give him “back” the bone marrow they removed to try and bring his levels back up to what there were before the transplant. If you remember way back in April they couldn’t do this with Rachel’s bone marrow because she had started to develop leukemia. So we are hoping this marrow will never be needed and that Michael’s marrow is currently leukemia free.

Also while we are in Minnesota we will be looking in on an “old” friend of ours, Cole. He is 2 years old and also suffers from Fanconi Anemia. We met Cole and his parents while we were in Minnesota. Cole has undergone his bone marrow transplant but it appears the transplant has failed. If you have a moment please visit Cole’s web site and offer your support for Cole and his family. His future is uncertain but we know first hand the encouragement and support you get from friends makes a tremendous difference. Cole’s web site is at www.caringbridge.com/page/colesmith

We will update everyone this week as to our meetings with the Doctors here in Connecticut.


Take care,


Mel

Wednesday, October 17, 2001 at 06:43 PM (CDT)

Day Plus 167


Rachel and Michael both had their counts done yesterday. We were happy with the results.

Rachel's counts are: Hemoglobin 11.7, ANC 5570, Plateletes 273,000 (the highest ever)and her creatinine level was 0.9.


Michael's counts even went up a little. His Hemoglobin is 11.2, ANC 500 and Plateletes are 48,000. Not great, but better than last time.

We actually get a two week break. We don't have to be back to clinic until October 30th.

We will go back to Minnesota on November 7 for Rachel's six-month check-up. At that time, they will also harvest some of Michael's bone marrow. They freeze the marrow, so when the times comes that he needs a transplant they have the marrow as a back-up.

We will keep you posted on any new developments that may occur. Otherwise we will be enjoying a couple of "quiet" weeks.

Take care.

Love Jackie

Wednesday, October 10, 2001 at 08:04 PM (CDT)

Day Plus 160

Rachel had her hickman out yesterday and everything went well. She is a little sore, but she can't wait to go swimming. A local gym in town has a pool so we will take her in a few weeks.

Her counts were excellent. Her Hemoglobin was 9.6 with an ANC of 2597 and plateletes are 210,000. She has been drinking very well so her creatinine level is 0.7. We were very pleased with those results.

Michael had his counts done too. Unfortunately his were not as good. His plateletes dropped to 31,000 and his ANC is 372 (this should be over 1000). We are hoping that the drop in counts are only temporary. Both Rachel and Michael will go next Tuesday to have them checked again.

We hope everyone is enjoying this time of the year. It is one of our favorites.

Take Care.
Love Jackie

Thursday, October 04, 2001 at 08:38 PM (CDT)

Day Plus 154

Michael had his bone marrow biopsy yesterday and everything went well. We won't know any results until next week.

Michael also learned how to ride his two wheel bike yesterday. He amazes us. He is the only kid I know that has a procedure done in the morning and learns to ride a bike in the afternoon.

Rachel's hickman removal has been changed to Tuesday, October 9. She is starting to get excited about having it out.

Not much else new here. Hopefully we will have a few quiet days.

Love Jackie

Tuesday, October 02, 2001 at 09:38 AM (EST)

Day plus 152
Take Two

Rachel came home today from the hospital and is doing very well. She has to be on antibiotics until October 9th. On October 10th she will have her hickman removed. We are very excited about that. The only drawback is that she has to drink at least 60 ounces of liquid a day. We try and make a game out of it and so far it is working.

Tomorrow morning at 7:45 am Michael will be getting his bone marrow biopsy. We should get the results on that next week.

Off to bed now because we have to be at the hospital at 6:15 am tomorrow.

Jackie


We are hoping that Rachel is being discharged from the hospital this afternoon. The doctors feel that it is the same infection that she had last time. They feel that she getting the infections from her central line / tube in her chest. They want to remove the central line very soon to prevent these threatening infections which is life threatening due to her immune system.

One of the doctors had mentioned starting Rachel on a feeding tube through her nose to administer the I.V. solutions at night. We are not willing to go this route yet. Rachel’s creatinine levels have been average but in another month she will begin to tamper off the medicine that is effecting her kidneys. So hopefully this will negate the need for further I.V. solutions.

This weekend was a tough one. To quickly explain it; we were not prepared for another infection / admission so soon. In Minnesota we were in the mind set of why and what we were out there for. Once arriving back home you try to catch your breath and feel as though you can try and “relax” a little. Well as we are finding out, we can never really totally relax. These infections / fevers creep up fast and unexpected. So the support from everyone means more then you will ever know.

There was one bright spot to our weekend. We are neighbors with Amanda and her family. She was admitted late Sunday night also with a fever. So it is nice to be able to spend some time with Bill and Cathy and the kids. We all would prefer to meet somewhere else….. but at this point we will take what we can get :>)

Well Michael has to have his blood counts done this morning. Tomorrow morning he has to undergo a bone marrow aspiration. The surgery might not occur if his platelets are to low.

We have to go to the hospital and get all of these things done before work tonight. Take care and we’ll let you know how the day goes.


Mel

Monday, October 01, 2001 at 08:46 AM (CDT)

Day Plus 151

We just want to let everyone know that Rachel has switched rooms at CCMC. Her new room is 806 and her new phone number is 545-8816.

We will update later when we meet with the doctors.

Jackie

Sunday, September 30, 2001 at 07:04 PM (CDT)

Day Plus 150

Today Rachel's blood cultures came back positive. It looks like she has the same infection she had at the beginning of the month. The cause of the infection is probably her hickman. We will discuss with the doctors whether the hickman needs to come out or not. She still has the hickman because she receives fluids twice a week. If they take the hickman out we might have to go to clinic a few times a week to get fluids. Once Rachel gets sick of doing that maybe she will start drinking more.

Tomorrow they are moving the Hematology/Oncology kids to the 8th floor. This will be a more sterile floor because there will be no kids with contagious diseases on it. So it will be a busy day. When we have the new number and room we will post it.

Her counts were good today: Her hemoglobin was 9.6, plateletes 124,000 and ANC was 3190.

We will update everyone tomorrow. Hopefully we will have a game plan as to how long we will be visiting CCMC.

Jackie

Saturday, September 29, 2001 at 07:35 PM (CDT)

Day Plus 149

Today Rachel was admitted to the Children's Hospital with a fever of 101.3. They started her on antibiotics and ran blood cultures. If the cultures come back positive that means were are dealing with a bacterial infection and she will have to be on IV antibiotics. If they are negative that means she has a virus and it has to run its course.

She will probably be in the hospital for at least three days. We will update you more tomorrow.

Rachel's phone number is 545-8620 and her room number is 725.

Jackie

Wednesday, September 26, 2001 at 1:33 AM (EST)

Day plus 146


Rachel and Michael both had a clinic visit on Tuesday at the Children’s Hospital. Rachel’s counts were very good. Her hemoglobin was 10.2, WBC was 5400, ANC was 3996 and her platelets were an amazing 229,000 !!!!!! I believe this is the highest they have ever been (probably in her life) Her creatinine level was 1.0 so she still has to receive the I.V. solutions at night.

Michael’s counts on the other hand were not so great. We were not surprised by this news because he has been developing a little cold. Also on Sunday he had two nosebleeds for no reason. The nosebleeds both stopped on their own but it can be an indication of very low platelets. Michael’s counts were hemoglobin 10.7, WBC was 3700, ANC was only 950, and his platelets were down to 37,000.

The doctor also found that Michael has an ear infection in one of his ears. This was surprising because he had “ear tubes” surgically implanted last year to help with the constant ear infections. (This is when the doctors had discovered that there is a problem with the eardrum in one of his ears causing major hearing loss. They also couldn’t place a tube in the ear because of the deformed eardrum –which is a symptom of the Fanconi Anemia). The one tube that he does have became partly dislodged and caused the latest ear infection.

In October Michael is scheduled to have a 5-hour surgery to try and rebuild the deformed eardrum. We are going to inquire with the doctors if they can also repair the dislodged tube at the time of the surgery.

So October is going to be ear surgery month, November is going to be our trip to Minnesota for Rachel’s bone marrow aspiration and Michael’s bone marrow harvest surgery. Hhhhmmmm I wonder what December will bring? : >)

Otherwise the kids are doing great. Rachel has a great tutor who comes to the house 2 hours each day. Rachel is doing very well on her work and loves all the homework. Michael is attending pre-school three days per week and loves coming home and showing us the projects he made in class.

We will keep everyone posted and I’ll try and get some new photos for the album


Mel

Monday, September 17, 2001 at 09:36 PM (EST)

Day plus 137


Rachel had her blood counts checked today at the Children’s Hospital in Hartford. Everything looks very good. Her hemoglobin was 9.7, the platelets were 163,000, her WBC was 2700, and the ANC was 1914. The best news was that her creatinine level was down to 0.6 With the fluids being within the acceptable range, the doctors have switched the amount of time she is required to receive the I.V. fluids. Instead of being hooked up to the I.V. pump nightly, now she will only have to undergo this every 3 nights. Rachel returns next week to the clinic for another check up and the levels will be checked again.

Otherwise everything else is busy as usual. This morning when we awoke the temperature had dropped overnight as it usually does with the approach of fall. I thought to myself where did the summer go; it seemed like winter had just ended a few months ago. Then I quickly realized that when we left CT in April it was still cold out. Now we are settling back into our home and the cold weather is returning. The summer went by too fast and we feel like we missed it.

The morning weather must have been an indicator of what was to arrive in the mailbox today. We received a letter from the hospital in Minnesota scheduling our return for Rachel’s six-month checkup in November. Michael will be accompanying us on the trip because he will undergo a bone marrow harvest operation at the same time. So even though we have just returned from Minnesota less then 7 weeks ago, we are making plans for a return trip. Hhhhmmmmm and I wonder where the seasons go huh?


Take care,


Mel

Wednesday, September 12, 2001 at 07:22 PM (CDT)

Day Plus 132

Hi everyone:

We just want to let you know that Rachel was released from the Children's Hospital yesterday. She still has to receive IV antibiotics three times a day to get rid of the infection. Other than that she is doing fine.

She went to her school today for about 45 minutes to have her school picture taken with her class. She was very excited to see everyone. Her teacher and classmates are wonderful people and made her feel right at home.

Michael had his counts done on Tuesday also. His platelets dropped to 49,000 again. Hopefully this happened because he is fighting a cold. He has to go back in two weeks to get them re-checked. Rachel will go back on Monday to get checked.

We hope everyone is doing well despite the horrific tragedy yesterday. We would like to send our condolences, love and prayers to all the victims and their friends and families. We would also like to say an extra prayer for all the policemen and firemen who gave their lives to help thousands of people. They are all heroes in our eyes.

God Bless You All

Jackie

Tuesday, September 11, 2001 at 07:03 AM (CDT)

Day plus 131


Sorry folks this one is going to be short and sweet because I don’t have a lot of time and also due to lack of sleep. A “customer” at work caused me not to get home until 2:00 a.m. and Michael and I have to be at CCMC at 9:00 a.m. for his blood counts.

Rachel is doing well and we are hoping she can be discharged from the hospital today. The doctors believe they have found an antibiotic that will fight off the infection. We are hoping that we can obtain the antibiotic in I.V. solution form and use Rachel’s current I.V. pump to administer the fluid. Otherwise she might have to stay at the hospital until the “cycle” of antibiotics is finished. But as we all know this can all change at a moment’s notice.


More later,


Mel

Sunday, September 09, 2001 at 08:26 PM (EST)

Day plus 129


Rachel is still in the hospital but doing okay. Her blood work showed that she still has the bacterial infection. She is receiving the I.V. antibiotics and hopefully that will clear up the infection soon. The doctors feel that she contracted the infection through her central line in her chest.

Her blood counts on Friday were Hemoglobin 9.9, platelets 154,000, the white blood count was 6400 and her ANC shot up to 5747. Obviously her system was / is fighting something off. On Sunday her counts were Hemoglobin 10.6, platelets 154,000, the WBC was 2500, and her ANC dropped to 1325.

Her fever has not returned which is good news. If she can remain fever free it is one step closer to being discharged from the hospital. We are hopeful the antibiotics will start kicking in soon and help fight off the infection. The doctors have not told us exactly when she will get discharged from the hospital, possibly on Monday or Tuesday.

Otherwise things are crazy around here. Michael starts pre-school on Monday and we are trying to accommodate everyone’s schedules around my work schedule and Rachel’s hospital stay. So life wouldn’t be normal without a little stress huh?

Hang in there gang and we will update everyone later on Rachel’s status.


Mel

Saturday, September 08, 2001 at 05:57 PM (EST)

Day Plus 128


Well I guess when I wrote Wednesday's update about no clinic visits it was a little too soon to write that. Friday morning Rachel woke up and was complaining of being cold and did not have an appetite.

A temperature check showed her temp was 102. So Rachel and I made the trip to the Children's Hospital while Jackie stayed home with Mikey and celebrated her birthday :>(

At the hospital Rachel temp stabilized and actually went down to 101.3. She was given some I.V. antibiotics and we were sent home. It was a good thing we made it home because we had a surprise party set up for Jackie. There was just a little stress of trying to keep the party on schedule and dealing with this latest crisis. But we were able to pull off the surprise party for Jackie.

Saturday morning Rachel's fever had broken but the doctor from CCMC called and told us that we had to bring Rachel into the hospital. One of the blood cultures taken on Friday afternoon showed that Rachel has a bacterial infection. So we made a few quick last minute arraignments and cancelled plans before heading out to the hospital. It is great that my sister is still living with us and was able to take Michael to his first soccer game. He was so excited about it and we didn't want him to miss his first day. However we felt terrible for missing it but we just readjusted our plans and made the best of it.

Rachel is currently in room 711 at the Connecticut Children's Medical Center in Hartford and will be there for possibly 3 days. I posted the phone # below if anyone wants to give her a call. She would love the call and / or visitors. She is feeling fine and is not contagious; we are hoping to have her back home on Monday.

Jackie did note that today is the one-month anniversary that we have been back in Connecticut. Funny how we decided to celebrate the anniversary at a hospital huh??? :>)


Hang in there gang. I'll update you one Rachel's progress / status

Mel

Wednesday, September 05, 2001 at 11:21 AM (EST)

Day plus 125


No clinic visits this week !!!! For the first time in a very long time Rachel or Michael do not have to visit a hospital. It is a very nice break and allows us to get readjusted.

Rachel had her first homework assignments last night. She was very thrilled and felt like she was back in school. Even though she can not attend school until possibly November her teacher is sending assignments home for Rachel. Today there was a meeting with the teachers about getting Rachel a tutor. We are hoping to have everything finalized next week.

Michael starts back to pre-school next week and is looking forward to doing that 3 days a week. Otherwise everyone is doing good. I also posted an updated picture of the kids and their friend “Julia”. The doll is named after a friend of ours who also has been to Minnesota for a bone marrow transplant. We wish Julia and her family all the best. If they ever need a second nurse Rachel is always available :>)


Take care,


Mel

Tuesday, August 28, 2001 at 10:32 PM (EST)

Day plus 117


Okay, I know I owe everyone an apology for not doing the web date for over a week but spare time is in short supply these days. When we were in Minnesota we had lots of “down time” to write the updates. Back here spare time is something we don’t have a lot of. I also went back to work last week and it was a very busy week and weekend.

First off Rachel’s counts from last Tuesday (8/21) were: Hemoglobin was 10.9, White cells were 4300, ANC was 2900, and platelets were 207,000. Today’s counts were about the same: Hemoglobin was 10.5, WBC was 4900, ANC was 3381, and her platelets were at 211,000

So Rachel’s counts speak for themselves. She is doing well. The fluid levels are still not under control and she is still required to be hooked up to the I.V. pump at night for fluids. But overall she is doing very well.

Today Rachel got to finally meet her 2nd grade teacher at the school’s open house. The teacher had sent letters to Rachel in Minnesota and has spoken to her on the phone but today was the first time they had met. Even though Rachel will not be able to attend class at the school until November, the teacher is still going to include her in the work. (We have to meet with the school officials next week about the home tutor and the schedule)
Rachel also had the opportunity to see some of her old classmates and her 1st grade teacher. It was a great to see her smiling even though she was a little shy about seeing some of the fellow students she had not seen since April.

Also this past weekend we had the pleasure of seeing some friends and the Tate family again. Rachel was so happy and excited to see Amanda, as we all were. It was great to see everyone doing so well.

Everyone who knows Michael knows that when he was in the Children’s Hospital in Hartford back in 1999 he became a big Wizard of Oz fan. Well since returning to Connecticut he has renewed his passion for the movie and has watched it about fifteen times. I think Michael’s new “girlfriend” Dorothy said it best……. “There is No Place Like Home”




Mel

Monday, August 20, 2001 at 01:05 AM (EST)

Day plus 109


Rachel’s clinic visit on Thursday went very well. Her counts were: White Blood Count was 5000, her ANC was 3500, Hemoglobin was 10.5, and her platelets were 188,000.
Her fluid levels (aka creatinine) level was 0.9 Due to the creatinine levels still being slightly elevated, Rachel is still required to receive I.V. solutions at night for a 12-hour period.

Otherwise she is doing very well and enjoying playing with her friends. In a few weeks there will be another period of adjustment for her. She will not be able to attend school until possibly November. The protocol for B.M.T. patients is that are not to be able to attend school until 6 months after the transplant. This is due to their weaker immune systems and the high possibility of catching an illness from another child.

I might have mentioned this previously but it is worth explaining a little further. When Rachel received the chemotherapy and radiation to deplete her old bone marrow, it also destroyed all of the immunizations that she had received since birth. She then received the transplant of new marrow but the donor’s immunizations are not passed onto her. She can not have any immunization shots until after approximately 1 year from the transplant. This is to minimize the chance of her body rejecting the new marrow.

So we are working with the school system and Rachel’s new 2nd grade teacher to set up home tutoring for Rachel. It will be an adjustment for her when all of the other children start school in a few weeks. She is very happy that her new teacher has already called her and sent her letters. It has made things easier on us and the teacher has already made Rachel feel like part of the class before it has even started.

Monday the home care nurse arrives again for the cleaning of Rachel’s central line and dressing change. Tuesday is the usual trip to the Children’s Hospital for blood counts and fluid level checks.


On another note, today is August 20, 2001. It has been one month since the death of 12-year-old Chris Siebenthal from Fanconi Anemia. To myself it is as though 30 days ago was a very long time ago. So much has happened in the past month and everyone is very happy with Rachel’s progress this far. But we can also not forget those people who are no longer with us.

People like Chris will continue to live in our hearts and will remind us that life is always too short and fleeting. Please take a moment today and remember Chris and his family but also reflect on your family and friends and how much they mean to you. For without them, who’s heart will you continue to live in when you are gone? Remember the important things in Life.


Mel

Wednesday, August 15, 2001 at 11:55 PM (EST)

Day plus 104


Rachel has an early appointment at the Children’s Hospital Thursday morning for her counts and fluid level check. She had been trying to drink more fluids to help flush out her kidneys. Hopefully all the drinking will pay off.

Some people have asked about our return trips to Minnesota. We have to return in November for Rachel’s 6-month checkup and biopsy. While we are there Michael is also going to have an operation and have some of his marrow cells harvested. This is done so that when he has to undergo his bone marrow transplant they have his cells stored in case the transplant fails. If that happens they can try and “re-transplant” his “old” cells back into him.

This same procedure would have been done on Rachel before her transplant but could not be. As some of you will recall this was because of the leukemia cells that had started to develop in her marrow. Michael will be undergoing another biopsy within the next month in Connecticut to check his cells and make sure leukemia isn’t developing.

Just to explain a little about the major concern for this procedure. The leukemia would destroy Michael’s marrow, as the Fanconi Anemia is already is doing. But to fight the leukemia he would require stronger doses of chemotherapy. Patients with F.A. have very weak cells and their systems can not tolerate the higher chemo without fatal results. So the trick is to hold off on doing the transplant as long as possible but to do it before leukemia starts.

So in November we return to Minnesota for a few days to complete those tests. Rachel will also have to return there in May for her 1-year checkup. We then have to return every year thereafter until 5 years after the transplant for checkups. Of course if any complications or graft versus host disease problems arise we will also return to Minnesota.

Well I have to get some sleep. I think I just tried myself out thinking of all those trips back and forth to Minnesota in the future.


Mel

Monday, August 13, 2001 at 09:24 PM (CDT)

Day plus 102

We received the results of the counts from Friday. Michael’s counts were better then last time. His White Blood Count is at 5700, his ANC is 1390, the hemoglobin was 11.5, and his platelets went up to 66,000. This was good news and we are hoping his counts stabilize for a little while.

Rachel’s counts were also good. Her WBC was 4500, her ANC was 3190, hemoglobin was 9.6 and her platelets were 175,000. Her creatine level was 1.2, which is high.
The preferred level is anything below 0.7 we have to continue to get her drinking even more fluids. (She is still required to have the I.V. solution and pump at night when she is sleeping.) So the elevated levels means another trip back to the Children’s Hospital this week to check the levels and possible require an additional transfusion.

Well the kids are doing fine which is more then I can say about the car. It is still in the shop and they are trying to track down what caused our little electrical problem last week on the drive home. Who knows maybe the car just wanted to get out of Minnesota as bad as we did :>)


Take care,


Mel

Sunday, August 12, 2001 at 10:18 AM (EST)

Day plus 101


Well it sure is nice to be back home. We do owe everyone in Connecticut an apology for the hot weather at the end of the week. We might have been responsible for that. The doctors in Minneapolis told us as a condition for us to leave there we had to take the hot weather with us.

When we arrived home at 2: 00 a.m. there were signs posted on the front lawns and balloons welcoming us home. There was even some new flowers planted around the house. Thank you to everyone for making it that much nicer being home. I posted a new photo in the album for everyone.

It is a period of adjustment being home, not only physically but also mentally. We also noticed the kids are adjusting. On the way home Michael made the statement “when we get to Auntie Suzy’s house can we….?” He forgot that it was OUR house we were going to. On Thursday Rachel asked us when we were going to mail the portable I.V. pump “back home to Minnesota?” We reminded her that we were home and she paused and realized what she had just said. She said “oh yeah I forgot” and walked away laughing to herself.

Jackie and I have to also adjust to remembering where things are in the house and finding a place for all of the boxes we mailed home. (Moving 3 times in one year starts to get a little confusing.)

On Friday the kids made their first trip back to the Connecticut Children’s Medical Center. They had their blood counts done and Michael had his stitches removed. All went well. We will not have the results of the counts back until Monday. This is also another “adjustment” we have to accept. In Minneapolis we would have the blood count results back within 20-30 minutes. In Connecticut, we have to wait usually 4 hours or more. Also the clinic here is closed on weekends.

Rachel & Michael are having a great time being able to run around outside and play with their friends. It great watching them just being kids again instead of patients.

I’ll update everyone tomorrow on the counts. Hope everyone is enjoying the cooler weather now.


Mel

Wednesday, August 08, 2001 at 11:36 AM (EST)

Day Plus 97


I have three words for everyone…………….WE ARE HOME !!!!!!!!!!

We left Rockford, Illinois Tuesday morning at 5:30 a.m. (CST) and decided to see how far we could get with the car. (We were happy that it even started in the morning). So we took this as a good sign. We drove straight through to Connecticut and arrived at 2:00 a.m. this morning. We did stop on the way and had a short visit with my cousin and her beautiful children in Penn.

We could have stopped on the way home but we were just determined to finally get home after four long months. We also didn’t want any medical emergencies and be “stuck” halfway between the only two hospitals we trust – Hartford and Minneapolis.

It was a great feeling coming home with the four of us in the car. I will be honest with everyone; Jackie and I had talked about how it would be driving home with only three of us in the car. It wasn’t something we wanted to dwell on but the thought did cross our minds.

The car ride was long but very enjoyable. The kids had a great time seeing all of the blurry slights as they whirled past the car. (Like I said we were determined to get home and I figured if the electrical system stopped working and we had enough speed going, then we could just “coast” back home.)

So we completed the 1000 miles car ride and do you think the kids went directly to bed? Of course not - they had napped on the way. They stayed up with my sister and Jackie talking until 4:00 a.m. It was a great feeling being back home. Now we had to adjust to being back and we can’t wait to see everyone.

Well, lots to do so I will keep this short. Thanks to everyone for signing the guest book. If you haven’t had a chance please do so; we are working on printing it out for Rachel.
Also some people have asked about sending flowers to Rachel. We are sorry but she can’t be around any new flowers or plants because of the possible bacteria, spores, and germs.

Thank you to everyone for your support. I will keep updating the web page and try and answer some of the common questions about the B.M.T process and the plan with Rachel and school, immunization shots, and our trips back to Minnesota this fall.


Signing off from Connecticut (for a nice change),


Mel

Monday, August 06, 2001 at 10:09 PM (CDT)

Day plus 95


We have made it out of Minnesota!!!

The morning started off with a little bit of an emergency. Rachel’s I.V. pump broke during the overnight and we needed a replacement pump A.S.A.P. Luckily the hospital brought one out to the apartment within 1 hour. It didn’t affect Rachel’s fluids levels that much but she only received a half of bag of fluid during the night. After closing up the apartment and packing up the car we went to the hospital this morning and said our goodbyes to the staff of the B.M.T. floor. Rachel had her clinic visit at 11:00 a.m. and the counts came out very good. Her platelets hit an amazing 220,000.

We met with Dr. MacMillian at 1:00 p.m. and she said Rachel is doing great and asked us if there was somewhere we wanted to go? She could tell we were all very excited about going home and she has a great sense of humor. We told her that we would be more than willing to stay a few more weeks if needed and I asked her what she would like for dinner? She was curious about our willingness to stay. I told her that if she made us stay longer then we would be staying at her house until she allowed us to go home. She started laughing and quickly said she saw no reason for us to stay any longer and we could take Rachel back to Connecticut. (I should have tried that ploy on her months ago and we could have been home by now)

We finally left Minneapolis around 3:00 p.m. and drove about 300 miles to Rockford, Illinois. We are actually staying at the same hotel we stayed at on the way out to Minnesota when Michael got his high fever in April.

Well either the hotel is jinxed or it is the area because when we arrived we started having a small electrical problem with the car. At least we hope it is a small problem. It was too late tonight to find an open garage and we didn’t want to push our luck and keep driving through the night. So we will deal with it in the morning we are just too tired tonight.

Rachel and Michael are having a ball seeing some of the same sights we saw on the way out here. It is rather difficult for me to enjoy the sites because I try to keep my eyes on the road at that high of a speed and Jackie is yelling out the passenger’s window at all the traffic to get out of our way :>)

I would like to thank everyone who has signed the guest book. It made a very tiring night a little brighter reading all of the new entries. We love hearing from everyone. I reposted the message about the scrapbook entries for anyone that missed it.

I would like to ask everyone who reads the updates to sign the guest book. We have decided to print out all of the journal and guest book entries and make a scrapbook for Rachel. We are also including pictures from the web pages that have been posted over the last several months. If everyone could just take a few seconds and sign in, it would be greatly appreciated.

We plan on giving Rachel the scrapbook and it will be nice for her to see all of the people that supported her through this. We have decided the title of the scrapbook is going to be called “The Challenge of a Lifetime

We will update everyone where we end up tomorrow, if the car co-operates. Otherwise we will be enjoying the “sites” of old Rockford, Illinois. Hhhmmm I wonder if they have an airport nearby and if anyone is looking for a slightly used 1994 Oldsmobile???


Take care gang. 300 down and only a 1000 miles to go.


Mel

Sunday, August 05, 2001 at 11:07 PM (CDT)

Day plus 94


Well compared to Friday this weekend was very uneventful. No hospital trips, no disabled cars and no more stitches. Just packing, packing, and oh…… did I mention packing? All the last minute details have been worked out with the furniture company and the utilities.

Now the big question is do we get to leave? We have a clinic appointment at 11:00 a.m. and then a meeting with the Doctor at 12: 00 p.m. to discuss Rachel’s discharge. Hopefully there are no surprises and we will receive the okay to leave for Connecticut.
Not to sound too anxious but we are going to the hospital tomorrow with the car fully packed with our suitcases. As soon as we are given the okay to leave you will hear a scream from Minnesota. Of course if are told we can’t leave, you will also hear a scream but with a slightly different pitch to it.

Of course I’m just joking there are many happy things about Minnesota and the time we have had out here. So if the doctors said we had to stay longer than that is what we would of course do. After all what choice do we have?

So I’ll try and update everyone tomorrow night. Let’s hope when I write the update it just won’t be from the State of Minnesota.

I would like to ask everyone who reads the updates to sign the guest book. We have decided to print out all of the journal and guest book entires and make a scrapbook for Rachel. We are also including pictures from the web pages that have been posted over the last several months. If everyone could just take a few seconds and sign in, it would be greatly appreciated.

We plan on giving Rachel the scrapbook and it will be nice for her to see all of the people that supported her through this. We have decided the title of the scrapbook is going to be called “The Challenge of a Lifetime”


Thanks for all of your support.


Love,

Mel, Jackie, Rachel, and Michael

Saturday, August 04, 2001 at 12:20 AM (CDT)

Day plus 92


Well, well, well who would expect us to have an uneventful Friday after the last two Fridays? Two Fridays ago we learned of the death of our friend, last Friday Rachel was readmitted to the hospital with a fever. So can anyone guess what happened this Friday?

Jackie was scheduled to meet with one of the BMT clinic nurses to go over Rachel’s medications and precautions when she goes home. While Jackie was driving to the hospital the car died a few blocks from the hospital. So the afternoon was spent trying to get the car towed to a garage and have it repaired. Not a difficult task if you live in the city and know the local honest towers and garages. But when you are 1300 miles from home you are left with a little stranded feeling. Of course while Jackie was dealing with this I was at the apartment with the kids. With only having one car we couldn’t go and help Jackie. Thankfully we were able to contact another family that was at the hospital with their son being treated. We had just had dinner with the family the night before and hadn’t expected to see them again so soon. But things work out for a reason and Jackie was able to get some great assistance from them. (Dave & Kelly – Thank you for all your help. It was greatly appreciated)

Needless to say it wasn’t a relaxing day and the stress of possible not having a car to drive back to CT next week wasn’t something we wanted to think about. Jackie spent the afternoon getting the alternator replaced in the car and sitting in the clinic getting answers about caring for Rachel back in CT. Jackie called late in the afternoon and said the car was repaired and she was on her way back to the apartment.

Well Rachel and Michael had been cooped up inside the apartment all day and we all needed to get outside and enjoy the nice weather. So I took the kids over to the apartment complex pool. Michael has really enjoyed the pool and learning how to swim. Rachel can wade in the water but can’t go swimming because of the central line/ tube in her chest. So she will play with Michael by the steps of the pool. They enjoy this and makes them forget why we are here in Minnesota. The only problem is when it is time to leave the pool and walk back to the apartment. They don’t want to leave – typical kids and who can blame them?

So when it was time to head back to the apartment Michael insisted he just wanted to jump into the pool one more time before we leave. So who can say no to a cute 4 year old who has been through some much this summer? So he does one more jump and whacks his chin on the edge of the concrete while landing in the pool. I plucked him out of the water as he was crying and holding his chin. This is when I saw the blood pouring down his chest from a large laceration to his chin. (The same spot he cut open when we were in Disney World with the Make-A-Wish tour) Well let me tell you I was making a few wishes right then and there and none of them involved staying in Minnesota!!!

So my assistant / nurse Rachel, and I quickly wrapped up Michael’s chin and rush him back to the apartment. Of course the only problem is that Jackie wasn’t home with the car yet and we don’t know anyone in the complex to ask them for a ride to the nearest hospital. But I did remember that there is a medical clinic next door to the apartment complex. So even though it wasn’t an emergency room you take what you can get in a pinch. So we quickly walked over to the clinic and the bleeding from Michael’s chin had slowed down. I was worried because of his low platelets lately but the wound had started to clot.

After all was said and done, Michael was the proud owner of seven stitches in his chin. He was absolutely great when they were sewing the laceration. The staff couldn’t believe he was so calm and laughing with them. Rachel was a great help also by reading stories to Michael while we sat in the waiting room. She also gave him a few shots of whiskey and a stick to bite down on to calm his nerves. She was cute though when she heard that Michael was going to need stitches she said “Stitches? I’m outta here!!!” She was funny and I think a small part of her was happy that she wasn’t the patient for a change. But she was even happier when the procedure was done and she saw that Michael was okay.

So we have decided that after the last three Fridays we do not want to spend another Friday in Minnesota so we are leaving here early next week (we hope). We have a meeting and a clinic appointment on Monday. If all the test results come back okay then we are hoping to leave here on Monday or Tuesday.

Gang, it has been a very, very long 4 months. We are so tired and mentally drained. We are just hanging on that nothing happens this weekend and we can leave. While the outcome of Rachel’s transplant is spectacular, the journey has been filled with many highs and lows. We just want to get off the roller coaster ride for a while and try and catch our breaths.

On a happier note I did manage to snap a new photo of the kids for everyone. It was taken a short time before Michael’s “swan dive” :>)


We’ll update you soon.


Mel

Thursday, August 02, 2001 at 08:48 PM (CDT)

Day Plus 91

Hi Everyone:

Today Rachel had her biopsy and everything went well. It is a short procedure and Rachel tolerates it very well. We should know the results of the biopsy on Monday. This biopsy will check to see how much of her bone marrow is working (anything over 10% is good) and will also verify that she is still 100% donor.

Rachel was also taken off a total of seven medications today (one is given five times a day). She was very excited about this (so was mom and dad). Hopefully this will make medicine time a little easier and shorter.

Tonight we had dinner with another family who has a son with FA. He was here for his six month check-up. He had his transplant in January and is doing very well.

Tomorrow I have a meeting with one of the BMT Clinic nurses to go over Rachel's care for when we are back in CT.

Hopefully if all goes well and we are fever free we will be heading back to CT soon.

We will keep you updated.

Love Jackie

Wednesday, August 01, 2001 at 11:59 PM (CDT)

Day plus 90

I can’t believe we are actually ten days from day 100. We are still hoping to be in Connecticut on Day 100 but we are still taking only one day at a time and trying not to get our hopes up for leaving early.

Rachel’s pulmonary function test went well today. This was the same set of tests that she had on April 18th (boy that seems like a lifetime ago) when Michael thought she was inside a fish tank (refer to the previous journals for that story). She got through all the tests without any problems. One of the reasons for the test is to check for damage to the lungs and breathing functions due to the chemo and radiation. We won’t get the results for a few days but there were no apparent problems.

Thursday morning Rachel will be undergoing a bone marrow biopsy. This is the final check of her marrow and to insure that it is still “donor marrow” and engrafting properly. Looking at how her platelets have been doing the past few months it would appear that the marrow is developing properly. (See I list those counts for everyone for a reason)

Well that’s about it for now just trying to get things organized and packed for the move.


Tune in tomorrow for more news from the Rachel channel


Mel

Tuesday, July 31, 2001 at 10:11 PM (CDT)

Day plus 89


Rachel’s clinic went well today she didn’t require any additional fluids. Her counts were also good. The White Blood Count was up to 6100, hemoglobin checked in at 11.1, and those platelets continue to amaze us with a score of 215,000

Wednesday morning I have to take her into the hospital for a pulmonary function test. This is just another check that is done for comparison tests. When we arrived here 300 years ago oops…. I meant 5 months ago, Rachel had undergone a week’s worth of tests. That was to establish her baseline. This week they are doing some of the same tests on her to check the conditions and see if there are any changes.

So far everything is looking good on all the tests. So if this continues then she will undergo another biopsy on Thursday to check her marrow. We are planning on being able to leave Minnesota sometime next week if all goes well.

Today the hospital authorized us to travel back to Connecticut with the portable I.V. pump for Rachel’s fluids. She is still requiring nightly hook ups to the pumps to keep her creatinine levels in check. So we were concerned about driving for 3 days and her fluids levels not being balanced correctly and her kidneys becoming affected. The pump will make this a lot easier and we will take enough I.V. bags of solution to get us through the ride back to Connecticut. We have already scheduled appointments back at the Connecticut Children Medical Center for Rachel and Michael. So the hospital visits don’t end with us leaving Minnesota. But we won’t mind the change :>)

Well I can’t believe August is almost here. I thought this month would never arrive. Have you ever heard the expression “endless summer”? Well I can assure you it wasn’t said by a schoolteacher, it was said and felt by the family and friends who have followed a certain 7-year-old girl through her bone marrow transplant. Amen.

If you have the time please click on the link below to Karen’s web site. She posted a new page that is very fitting for saying farewell to Chris.


Take care,


Mel

Monday, July 30, 2001 at 10:32 PM (CDT)

Day plus 88 – Part II


Rachel was discharged from the hospital today and is back at the apartment tonight resting. She is doing well and her counts were very good. Her White Blood Cells were at 3600, the hemoglobin was at 10.5, and the platelets were at a very healthy 201,000

She is happy to be back “home” and is starting to look forward to going back home to Connecticut soon. She is actually starting to talk about it for the first time in a long time. (Of course some of us have been talking about it since we arrived here :>)

Michael’s clinic visit went well also. He is holding his own for the moment. His White Blood Count was at 4000, his hemoglobin is 11.4, and the platelets were 56,000. So we are very happy that his platelet count has risen slightly.

Tomorrow Rachel has to return to the clinic to have her creatinine levels checked. If she fluid levels are not within the proper range then she will get another transfusion of fluids. We also spoke with the doctors about her fluid levels and traveling in the car for several days. We might have to make arraignments to bring the I.V. pump with us on our ride back to CT so she can still get the right amount of fluids while we are traveling. This will have to be worked out later in the week with the hospital.

We do have a lot of arraignments to make this week so we can leave here sometime next week. The difficult part is we don’t have an exact date of departure yet. But after everything we have been through for the last 5 months we can work around the “small stuff”. Starting to get a second wind out here and got the old mojo working on finishing up all the packing :>)

Also if anyone tried to e-mail us since Monday afternoon there is a problem with the e-mail. I have contacted our ISP and they should have the problem corrected within 24 hours. I’ll post an update when the problem is corrected. -----As of Tuesday morning at 8:00 a.m. the e-mail is working again


Talk to you soon gang.


Mel

Monday, July 30, 2001 at 08:15 AM (CDT)

Day plus 88


Rachel is doing better and we hope she will be discharged from the hospital sometime today. Her counts have been improving a little and the blood cultures have come back negative so far. The doctors believe that she was just suffering from a bacterial infection called C-Dif.

This is very common in people who have undergone bone marrow transplants. It has to do with their immune systems being so weak. The fever that Rachel had on Friday is gone and they have now started her on the anti-diarrhea medication again. She will remain on this for 10 days. Hopefully this will help her fluids levels and stop her from being dehydrated.

So the game plan as on this morning (which is always subject to change at a moments notice) is that she will be discharged today and still undergo her bone marrow biopsy on Thursday. There will probably be a few clinic visits in between. I also have to take Michael into the clinic this morning to have his counts checked.

So it’s Monday and already starting off busy. We are hoping that the next 7 days go as scheduled with no “surprises” so maybe we can leave Minnesota sometime next week. We are trying to remain optimistic and not set ourselves up for disappointment if our departure is delayed.

I’ll update everyone tonight.


Mel

Saturday, July 28, 2001 at 07:32 PM (CDT)

Day Plus 86

Hi Everyone: We want everyone to know that Rachel is doing good. Her fever broke during the night so we are just waiting for the cultures to come back to see if she has a bacterial or blood infection. Those results should be in by tomorrow sometime.

We met with the Doctor today and she said that this shouldn't delay our return home. The only way it would is if the infection is a blood infection (which we don't think it is.) Rachel would have to be on IV antibiotics for 10 days. In turn, that would delay her biopsy and our return about a week. As of today (and this could change) we should be home sometime during the week of August 6th. But, as always, this is tentative.

Mel is staying with Rachel tonight and Michael and I are packing boxes to mail back to Connecticut.

We will update tomorrow when we get more results.


Love Jackie

Saturday, July 28, 2001 at 12:01 AM (CDT)

Day plus 86


Well, well, well as everyone who knows us, knows that we can’t really make any long tem plans for anything. This weekend we did not have any visitors or plans so Rachel thought she would schedule something for us to do.

Yes, Rachel decided to schedule a nice drive in a rainstorm to the hospital tonight. Michael was excited because he got to ride in the car in his pajamas at 9:30 at night. None of this is actually Rachel’s fault. Friday night she started spiking a fever of 101 so we had to rush her to the hospital.

Friday afternoon she started getting some diarrhea but didn’t complain of a feeling ill. When we were putting her to bed we noticed that she felt very warm. She also started complaining that she was very cold even though she was overly dressed.

So she was admitted to the hospital and Jackie is staying with her tonight. The phone number is listed on the web page if anyone wants to call. As of right now we don’t know what is causing the fever or diarrhea hopefully it is just one of those little “bumps” along the bone marrow transplant road.

We will update you as we learn more.


Mel

Friday, July 27, 2001 at 12:06 PM (CDT)

Day plus 85


Rachel’s clinic visit on Thursday went well. Her counts were very good with the white count at 6400 and her platelets at a record high of 207,000. Her creatinine level in her kidneys was not good. She has been drinking a lot of fluids to “flush” her kidneys but it hasn’t helped the levels as well as we had hoped. We were told that children with Fanconi Anemia sometimes have kidneys that are just a little slower responding to the fluid intakes and the kidneys needs some assistance. So you guessed it, Rachel had to be hooked back up to the I.V. pump at night for fluids. The doctors told us that it isn’t uncommon for the kidneys to need “assistance” for up to six months after the transplant.

While we were disappointed with this news it is just one of the small set backs that we have become use to. We were hoping that when Rachel underwent her biopsy next week they would also be able to remove her chest tube. She has been looking forward to going swimming all summer long and couldn’t because of the chest tube. Also it would be very nice to have taken one more step towards “normalcy”. So the tube won’t be removed next week and we will have to see how things progress back in Connecticut before it can be removed.

Thursday was also Rachel’s last day meeting with her tutor. Rachel loved working with Beth and will miss her greatly. In fact this morning Rachel was going through her schoolbooks and giving herself homework assignments to work on. Rachel will probably have to be tutored at home in Connecticut for a few months while her immune system strengthens. This week she received a package from her new 2nd grade teacher and we can’t wait to meet her when we return.

Also yesterday my Mother returned to Connecticut. We had a good visit with her. We can’t wait to return in a few weeks and see everyone. There is still a lot of packing left to do and it makes it a little harder not knowing the exact date that we can leave the State of 10,000 lakes. (What ever the date let me tell you it can’t be soon enough!!! :>)



Counting the days,



Mel

Wednesday, July 25, 2001 at 11:29 PM (CDT)

Day Plus 83


Rachel is doing well and has not had a hospital visit in 2 days. Thursday is a routine check of her counts and her fluid levels. She has been eating and drinking very well. She also has not required the use of the I.V. pump for fluids at night. So we are happy with this trend.

I would also like to thank everyone for helping out on Chris Siebenthal’s web site and making his last wish of 25,000 hits come true. Never under estimate the power of the Internet and some determined, caring people. In less then 48 hours there have been over 21,000 hits on Chris’ site. I think this is especially warming because his service will be held on Friday so his wish will be granted before this. It makes it that much more special for his family and friends. THANK-YOU.

More tomorrow with the clinic visit counts and any new developments.

We also just learned that on Thursday morning at 8:09 CST on the NBC Today Show there will be a segment on bone marrow transplants. They will be showing a bone marrow patient meeting her donor. Please watch the show if you can there is still a large need for donors.

Thanks,

Mel

Monday, July 23, 2001 at 09:22 PM (CDT)

Day plus 81



Well it was been a busy weekend and we had a clinic visit on Monday. So first the clinic visit news. Rachel’s counts were very good. Her WBC was 5600, the ANC was 4300, and the platelets dropped to 169,000. I asked the doctor what the “normal” platelet range is for a child who is on Day 81 after transplant? He said usually the platelets are around 30,000. So we are very pleased with Rachel’s progress so far.

We also had Michael’s counts done and his were a little better then last week. His White Blood Count was at 4200, ANC was 1200, and his platelets were at 45,000. We will have to continue monitoring his counts now weekly instead of monthly. Also we will make an appointment with the doctors in Connecticut to have a biopsy done on Michael’s marrow when we return home. He was scheduled to undergo his yearly one in November but at this point it is best to move the operation up a few months. If his counts continue to drop then Michael will have to start taking medications and we begin the process all over again.

This weekend we had a visit from one of my cousins and his wife. They drove up from Iowa and had dinner with us. It was a nice visit and good to see him again and meet his wife. On Sunday my Mother arrived her for a 5-day visit. The kids were so excited to have Grandma coming to visit they talked me into taking them to the airport to pick her up. I don’t know what the heck I was thinking by agreeing to that but I gave in. The Minneapolis/ St. Paul International is HUGE and involves a lot of walking. Which translates to Michael telling me after about 10 feet of walking that his feet are tired and I have to carry him. So we did this and made sure Rachel had a good mask on to keep out the germs. Well we arrived at the proper gate with half an hour to spare. Then we saw that the plane was going to be delayed an hour. Oh well nothing like spending the afternoon in a busy airport with a bored 7 and 4 year old. We made the best of it and they we happy to see Grandma arrive.

On another note. A lot of people have responded to the webdate of Saturday July 21st and the death of Chris. In the webdates out of respect for the family I didn’t post Chris’s last name. A few people asked how they could pass along their condolences to the family. I have checked with Chris’ Mother, Karen, and she does not mind their information being posted on the web site. In fact she was happy because she wants people to learn more about Fanconi Anemia and the seriousness of it.

Karen and Chris Siebenthal had two web sites set up when they arrived in Minnesota to begin the transplant process. Karen’s web site was for her family and friends to check on Chris’ progress. Chris had his own web site and gave you the view of a 12-year old patient. I have put the web set links down below on Rachel’s web page.

On Chris’ web page he wrote that he wished to see 25,000 hits on his web site counter. When he died on Friday July 20th there was approximately 1,000 hits on the site. I would like to ask each of you to help me make one of his last wishes come true. Please visit his web site numerous times. Each time you click on the site or click on the other icons (scrapbook, pervious journals, etc.) and then back to the main web page it will register a hit on the web site counter.

You may also visit Karen’s web site and view pictures of Chris and his brother and sister. Several people have also used Karen’s guest book to offer their condolences to the Siebenthal Family.

So please take a few minutes and click on their web sites. Please pass along Chris’ web site to everyone so we can all help him get his wish of 25,000 hits. (Or just use the link from Rachel’s site to get to Chris’ web page.) It only takes a few minutes and will mean a lot to the family.


Thanks,


Mel

Saturday, July 21, 2001 at 11:00 AM (CDT)

Day plus 79


This is one of the hardest updates I have had to write so I’ll get through the easy stuff first.

Rachel’s clinic visit on Friday went very well. Her WBC was 6200 and the platelets were up to 191,000!!!!! That is the highest they have ever been (probably in her life). So we hope they keep rising. Her creatinine level was down to .07 so the doctors were very happy with the fluid levels. Rachel has been drinking like a little fish (maybe it was that trip to the aquarium that helped??) and that has helped the fluid levels. The doctor told Rachel that if she continued drinking a lot of fluids then she wouldn’t need to be hooked up to the I.V. pump for the weekend. So we were all very happy with this news because it is one less thing to prevent us from returning home. We return to the clinic on Monday for blood counts and a consultation about Michael’s progress.

Now for the difficult part. Last night the disease of Fanconi Anemia claimed yet another young life. This time it was someone we know and have met. It is with the utmost regret that I tell you that our 12-year-old friend Chris from Connecticut died last night. We had dinner with Chris and his Mom on June 29th when they arrived here in Minnesota to undergo Chris’ transplant. We have also been keeping up with Chris and his progress during his transplant.

This news is very difficult for us because Chris’s Mother, Karen was one of the first parents we had spoken to when Rachel and Michael were diagnosed in 1999. There were a lot of similarities between the kids. In fact Chris was admitted to Rachel’s old room for the transplant. When our kids were diagnosed we turned to Karen for “advice” because she and her family had been dealing with Fanconi Anemia for a few years at that point. I feel at a total loss right now because there is nothing we can do to help them as they have helped us.

We wish to extend our condolences to Chris and his entire family. I’m at a loss for words that will try to comfort them. I am still in shock that he is gone. While I will never understand why children are the victims of terminal diseases. I was starting to “feel comfortable” again now that Rachel has possibly gotten through the worst part of the bone marrow transplant. Well the loss of Chris has shattered that comfortable feeling and made the future of Rachel and Michael that much more uncertain. Everyone please hug your kids a little bit tighter today.

Rest in Peace Chris and know that you will always be missed and loved.



Mel

Thursday, July 19, 2001 at 11:16 PM (CDT)

Day plus 77


Well not much new to report to everyone. Rachel’s appetite and drinking levels have increased. Hopefully the fluid levels in her kidneys will be high enough for Friday’s clinic visit. The doctors did not want her to be hooked up to the I.V. pump tonight so they could get an accurate reading tomorrow morning on the fluid levels. If the creatinine levels are low enough then we can discontinue using the I.V. pump for the additional fluids at night. This would be just one smaller step towards getting back home. So let’s hope the levels are good.

Rachel is starting to become more like her old self and has more energy. We are trying to keep her a little more active each day and still work around medication schedules and doctor appointments. Today we went to a small aquarium that is located in the bottom of the Mall of America. The kids enjoyed seeing the different types of fish, sharks, and other marine life. We were only there for a short time but they enjoyed themselves. They were allowed to touch live Stingrays that were in a small pool. I posted some new pictures in the photo album of their adventure.

We will update everyone on tomorrow’s clinic visit. Have a great day :>)



Mel

Wednesday, July 18, 2001 at 11:16 AM (CDT)

Day plus 76


Well the clinic visit yesterday went well. Rachel’s counts were very good. Her platelets are up to 169,000 and her white blood count was 4700. Michael’s counts were a little different. His WBC was 3900, his ANC was 1000, and his platelets were 41,000

We were happy his ANC was up. Anything consistently below 500 and the doctors will want to start him on medication to boost the ANC levels. Michael’s counts have been fluctuating between 300 and 1000 for the past month or so. His platelets have also dropped from the mid 60’s down to the 40’s since we arrived here in April. We will be meeting with the doctors here on July 23rd to discuss Michael’s condition and possible course of action.

We are hoping his counts hold out until we return to Connecticut. The reason being is that the doctors at the Connecticut Children’s Medical Center are use to treating the disease. The doctors here are use to dealing with the disease when the “treatments no longer work” and a bone marrow transplant is the only option left. We also don’t want to start a treatment process here and then have to have everything changed a few weeks later when we return to Connecticut. Also it is an uneasy feeling driving 1300 miles when your child might need medications or counts done right away. We found this out when we drove out here and Michael got a high fever – we don’t want to go through that again.

So we are hoping things remain as normal as possible for the next 4 weeks or so. It would also be nice to have a little bit of a break between Rachel’s BMT and having to start Michael on the same treatments. But we are just taking one day at a time and trying not to worry about things we cannot change.

On other news we have started packing up the apartment. We figured we might as well start mailing boxes back to Connecticut now. It is amazing all the things that everyone has sent to us during the past 4 months. We are trying to send home all the things we don’t think we will need for the next month or so. But we have to be careful because some of things we can’t send in case Rachel gets admitted to the hospital again.

Well the weather here is great again so we are taking the kids outside to get some fresh air and a trip to the post office – again.


Hang in there gang,


Mel

Sunday, July 15, 2001 at 11:44 PM (CDT)

Day plus 73



The weekend was “hospital visit free” which was a nice change. We were able to enjoy the time with the twins and Steve and Liza. Steve came up with a great game he started playing with Rachel and Michael on Saturday. It was called “Who can drink the most liquids in a day?” It was a great game to get Rachel to increase her fluid intake to help out her creatinine level in the kidneys (actually the point of the whole game). They set up a chart to keep track of which “team” was in the lead. The teams consisted of Rachel and Michael versus Steve. The total score by the end of Saturday night was 25 glasses versus 28 glasses. Needless to say Rachel and Michael were happy with their victory and gleamed when Steve purchased them some new coloring books as their prizes.

Steve and the family left Sunday morning to fly back to North Carolina. Rachel and Michael told Steve they were going to continue the “contest” while he was gone. So we are encouraging this to continue with Rachel and pointed out to her that if the creatinine levels came down then she could stop having the I.V. solution at night. She was happy to hear this and happily “charted” her progress today on the drinking chart. Her appetite has also improved greatly over the past few days and she seems like she is getting back to being her old self as you can see in the new photos in the scrapbook.


Take care,

Mel

Friday, July 13, 2001 at 08:34 PM (CDT)

Day plus 71


We returned from the clinic and Rachel’s counts are doing better. The WBC is 3800 and her platelets have gone up to 120,000. The results from the DNA test came back and her marrow is still 100 percent from the donor!!!!!!!!!!!!!! :>) So we were very happy with these numbers. Her kidney fluid levels are almost to an acceptable level but she has to remain on the I.V. fluid solution at night. We have to return to the clinic on Tuesday. We also scheduled an appointment for Michael to have his counts checked. It appears that his platelets are still very low because he bruised himself yesterday very easily.

While at the hospital we also met with another family that recently arrived from out of state to undergo a bone marrow transplant for their 2-year-old son who has F.A. The hospital asked if we were willing to meet with the family and discuss Rachel’s progress so far. The family was very nice and had a lot of the same questions we had when we arrived here. We wish Cole’s family the best of luck and know that the process is a very hard and difficult journey but it is well worth it.

Steve and Liza arrived here Thursday evening with Lara and Edward. The twins have grown so much and Rachel and Michael were surprised at how big they have gotten. The kids are having a great time playing “big sister and brother” to the twins. Lara and Edward are enjoying exploring the apartment and having so much attention from Rachel and Michael.

We have posted some new photos in the photo album for everyone.


Counting the days (4 more Fridays and 1 more 11)


Mel

Wednesday, July 11, 2001 at 07:45 PM (CDT)

Day plus 69


Rachel’s short visit to the clinic today turned into a little longer clinic visit then we expected. Her counts were good. The WBC was 5400 and her platelets had risen up to 102,000. But the magnesium level was high so she had to be hooked up to another I.V. for an hour and a half. We were able to leave the clinic around 3:00 and enjoy the rest of the afternoon.

Well for everyone keeping track of the days we only have 1 month left until day 100. Today is July 11, 2001 and that means there is only one 11 left – August 11th which will be Day 100 since the transplant. But this date is not “carved in stone” to quote our doctors. Rachel could be released a few days before or a few days after Day 100 depending on her counts.

It certainly doesn’t seem like Day 100 is that far away. When we arrived here on April 11th August seemed like an eternity away. Now we can see a little light at the end of the tunnel :>)

I will also update the photo album in the next few days for everyone.

Hang in there gang,


Mel

Tuesday, July 10, 2001 at 09:04 PM (CDT)

Day Plus 68

Hi Everyone: Rachel's clinic visit went well today. Her hemoglobin is 10.9, her ANC is 4600 and her platelets are 93,000. Her creatinine level increased to 0.9 today since she is off the 24 hour-a-day fluids, so the doctors increased her IV fluids that she gets here during the night.

Michael's counts were not as good. His ANC was only 600 and his platelets were 42,000. I have the feeling his bone marrow is starting to fail more and he might need to start some of the temporary medicines that Rachel was on before transplant. We will keep monitoring him and let you know of any developments.

Rachel is very glad to be home and is anxiously awaiting the arrival of her two cousins on Thursday. They are almost two years old, and for all of you that know Rachel she loves to take care of kids younger than herself. She is gearing up to play mommy for a few days.

We have another clinic visit tomorrow to re-check her creatinine levels. We will let you know how we make out.

Love Jackie

Monday, July 09, 2001 at 09:47 PM (CDT)

Day plus 67


Rachel was discharged from the hospital today and is resting at home tonight. She is very happy to be back at the apartment and in her own bed. Her counts hadn’t changed much but the platelets did rise a little on their own so we hope they will continue to do so. The platelets were 61,000 and the WBC was 5100.

The bad news was that her blood pressure has been very high and she and had to start taking medication to get it back under control. The high pressure can be caused by one of the other medications that she is taking and needs to continue taking. Once again everything is a balancing act.

The medication residue levels (aka creatinine level) in her kidneys have dropped to a level within the acceptable range. This is good news but she was also hooked up to continuous I.V. solutions since July 4th so this might have something to do with it. She is still required to receive the I.V. solution at night with the portable pump but if the creatinine level stays down then maybe this will be discontinued soon.

Tuesday morning we have to return to the clinic with Rachel and have her blood counts checked. We also squeezed in an appointment for Michael to have his checked during the same visit. No sense in making two trips for the same tests.

Otherwise things are normal as normal can be. The weather has been great and we are trying to spend sometime outdoors away from “hospital type settings.” We are also trying not to get our hopes up that we only have a little over a month left here in Minnesota. The 100 days is only a guideline. It could be more or less depending how Rachel’s condition and immune system is when we get closer to the 100-day mark. They will also check the cellularity of her cells before day 100. This is to see how the donor’s marrow is doing and to make sure it is still continuing to thrive. So let’s all continue with those healthy thoughts. As we all know great things take time but they sure are worth waiting for.




Take Care gang,


Mel

Sunday, July 08, 2001 at 07:49 PM (CDT)

Day plus 66


Well not much to report today. Rachel is still in the hospital but is doing better. Her counts came in at 5200 for the white count, 3500 for the red blood (which is a little low), the absolute Neutrophils (ANC) came in at 3500, and the little old platelets came in at 55,000.

We are hoping the counts will start rising soon so it will give an indication that she is kicking this infection. She only got sick once last night and again this morning. The medication they started for the diarrhea appears to be working. This is extremely good news because if Rachel had graft versus host disease then the medication probably would not have any effect on the diarrhea. So it appears as of right now (everything is subject to change at a moments notice as we all know) that Rachel only had some type of stomach bug and not GVHD.

Since her temperature returned to normal the doctors have decided to stop giving her the antibiotics in her I.V. She is still receiving fluids by I.V. but nothing else. Compared to when she was undergoing her BMT and the I.V. pole had about 10 different medications on it, the current I.V. pole looks empty with only one bag. We have also taught Rachel how to unplug the pole from the wall and wheel it around by herself. When we first arrived at the hospital on July 4th she claimed she had “forgotten” how to do this. Well we quickly taught her so when she has to get up several times in the middle of the night it is a little easier on us.

So if the fever doesn’t reappear tonight and the diarrhea slows up then she can possibly be discharged from the hospital on Monday. We will keep everyone posted.


Mel

Saturday, July 07, 2001 at 06:31 PM (CDT)

Day Plus 65

Hi Everyone: I just returned from the hospital and Rachel is doing okay today. Her fever continues to still be normal. They put her on antibiotics last night to help with the bacterial infection they "think" is causing the diarrhea and it seems to be working. We will know for sure tomorrow. If it is working then we will probably be able to go home Sunday or Monday. If the diarrhea does not continue to slow down they will do a scope/biopsy to detect if she has GVHD. At this point the doctors seem to think it is a combination of the stomach bug and the bacterial infection in her gut.

Her counts were okay today. Her white count was 5200 with an ANC of 3500. Her hemoglobin was 10.4 and platelets were 57,000. Hopefully her counts will start coming back up over the next few days.

We will keep you updated to any changes or new discoveries the doctors may find.

Love Jackie

Friday, July 06, 2001 at 09:13 PM (CDT)

Day plus 64


Rachel still remains in the hospital and will probably remain there throughout the weekend. She is doing okay and her temperature today was back to normal. Her counts have dropped since yesterday and she also required a whole blood transfusion yesterday. Her white count today was at 6500 and her platelets dropped to 56,000. This is not unexpected because her body is still fighting something off.

Now for the cause of this fever. It is still unknown. Yesterday we were told it was a bacterial infection by one doctor and them told it was a viral infection by another doctor. Some of Rachel’s tests showed it might be a viral infection called Rotavirus. Which is basically a stomach illness and would cause all of the symptoms that she is exhibiting. But today when they ran the same tests she tested negative for the Rotavirus.

She also has a lot of diarrhea. This could be a sign of graft versus hosts disease but she is not having any pain anywhere, which usually occurs with the GVHD. She is still receiving antibiotics through her I.V. line and they will be adding another medication to combat the diarrhea. The doctors have not ruled out that Rachel might have a temporary stomach illness and GVHD. They want to treat her as though she has both until the results from some more tests indicate what is causing the illness. If the diarrhea continues then she might have to have another procedure done involving a scope to go internally and look for the problem. That determination will be made in a few days but we are hoping it is not necessary.

Jackie is spending the night with Rachel and I returned back to an empty apartment with Michael. Today Jim and Mary Lou and the kids returned to Connecticut. I had to say goodbye to them last night at the hospital when I relieved Jackie for “hospital duty”. I spoke with them tonight and they already miss being here. It also felt strange returning to the apartment and they weren’t here. They are a big part of our lives and we loved having them here with us. It made everything more bearable. So let’s hope the next 36 days go by very fast so we can return home and see everyone soon.

We will keep everyone updated throughout the weekend as to Rachel’s condition and any new developments.


Sleepless in Minnesota,


Mel

Thursday, July 05, 2001 at 10:53 PM (CDT)

Day Plus 63

Hi Everyone: I just returned from the hospital and Rachel is doing much better. It looks like she just has a stomach bug and not GVHD. The doctors say this is very common.

We will know more tomorrow and we will keep you updated.

Love Jackie

Thursday, July 05, 2001 at 03:17 AM (CDT)

Day plus 63


Well this a good news and bad news update so I’ll start off with the good news first. I took Rachel to the clinic Wednesday morning. Her counts had changed again. Her white blood count was 9200 and her platelets had dropped to 76,000. Well I know I always write about the WBC and the platelets so here is a new one for you. Her magnesium level had dropped below the acceptable range. So she had to have an hour of I.V. solution to adjust the magnesium levels. We left the clinic around 1:00 p.m. and headed back to the apartment.

We were able to spend the day with Jim and Mary Lou and the kids relaxing and enjoying the nice weather. We were planning on attending the local fireworks show but it wasn’t scheduled to start until 10:00 p.m.and the kids were tired from playing all day. Also Rachel had to be at the hospital at 8:00 a.m. Thursday for her bone marrow biopsy and we didn’t want to wear her out by staying out late. So we decided to put the kids to bed and let them get some rest.

Well as we were tucking Rachel in for the night I noticed she felt very warm. She said she felt fine but we took her temperature anyways. It was 103!!! So we placed a phone call to the on call doctor and we were told to bring Rachel directly into the hospital to be admitted. We knew before speaking with the doctor that Rachel would have to be admitted because her fever was so high. So it was off to the hospital at 10:00 p.m.

Thank God, Mary Lou and Jim was here at the time. They were able to watch Michael while we took Rachel to the hospital. They are truly lifesavers and greatly helped us by having one less thing to worry about.

There was even a little bit of a bright side (if there is EVER a bright side) on our trip to the hospital - we got to see 9 different fireworks shows with Rachel. It was actually quite easy. All you have to do is drive down the highway around 70 M.P.H. rushing your daughter to the hospital. The highway that we take to the hospital passes through several towns and the City of St. Paul. They were all having their fireworks displays at 10:00 p.m. so we saw about 9 shows along our quickly traveled route. That was the bright side of our journey.

Once we arrived at the hospital things were not so celebratory. Rachel was directly admitted to the 5th floor pediatric floor, not the bone marrow transplant ward. There are several MAJOR reasons that this is a concern for us. First the rooms do not have the special air filters in the rooms to sterilize the rooms. The rooms are not sterilized for BMT patients and lastly there are other children on the floor that are ill but are not BMT patients. I know this sounds odd but let me explain. There could be a child with pneumonia in the room next to Rachel and if this child or a visitor comes into contact with Rachel or even walks by her room coughing it could spread the germs. Also the nurses who have contact with this child also have to take care of Rachel. Since the rooms don’t have the special air filters the doors to the rooms do not have to remain closed. This means anyone walking down the hallway is a risk of spreading something onto Rachel and her weak immune system.

I know this sounds a little paranoid but put your self in our shoes. Rachel has been doing so well we don’t need someone else’s carelessness or lack of hygiene/ common sense to make Rachel’s condition worse. (The nurse who met with us on the floor had worked on the BMT floor and remembered us. She agreed that Rachel shouldn’t be in a “regular room” and required a special BMT room.) We immediately closed the door to Rachel’s room and instructed the other nurses of our concerns about the open door. We spoke with the doctors about transferring Rachel to the BMT floor. We were told there are no beds available. Also all of the rooms on the pediatric floor with the special air filters were occupied. The other wing / half of the floor is having the carpet replaced and is closed for a month. Hence, even less beds available for BMT patients who have to be readmitted. In fact all of the pediatric patients that had been there have been transferred to another floor in which the patients have to use a common bathroom. Thank God we did not get admitted to that floor.

The doctors examined Rachel and her temperature was up to 103.2 More blood work was taken and she was started on more I.V. fluids and antibiotics. She also had a chest x-ray taken. I don’t have the results of these tests back yet but hopefully we will know something later this morning. One of the doctors also saw a small rash on Rachel’s back. He thought it might possibly be the start of graft versus host disease with all of the other symptoms she has been showing. This could mean that Rachel’s body is rejecting the bone marrow IF the rash is from GVHD. But she is also running a high fever and this could cause her skin to become red at times. He checked the rash 20 minutes later and it seemed to have dissipated slightly. It will be monitored closely and we will keep everyone informed.

So Rachel will be spending the next few days back in the hospital until the fever breaks and they can figure out what is causing it. Jackie is staying overnight with Rachel and we will switch tonight. One of us will always be with her in the hospital and the other will be with Michael.

We will keep everyone posted as soon as we find something out and her bone marrow biopsy that was scheduled for Thursday morning will be rescheduled.

Got to get some sleep I have a feeling it is going to be long and hard weekend :>)


Mel

Wednesday, July 04, 2001 at 12:03 AM (CDT)

Day plus 62 --- HAPPY FOURTH OF JULY


Sorry it has been so long since the last update but we are having such a good time with our friends, time is just flying by. The kids are having a great time playing with each other that the days pass very quickly and the next thing I know I haven’t updated everyone in a few days so here goes.

Rachel and Michael were very surprised by the arrival of our neighbors. I picked then up at the airport Saturday night and drove back to the apartment. We had Sami and James knock on the door and Michael answered it. He couldn’t believe what he was seeing. Rachel was still inside the apartment so we couldn’t see her initial reaction. But judging from the past few days they are very happy to have other kids to play with. We are very happy that they could join us and make this place so much more fun and bearable. Now if we could only convince Jim and Mary Lou to stay until August 11th………….

Rachel didn’t have an easy weekend. She has become sick to her stomach several times on Sunday and Monday. We thought it might be some of the medication she has been taking but we feel it might be more than that.

Tuesday she went to the clinic and her counts were down. Her white count was 8000 and her platelets had dropped to 83,000. The doctors have told us this is normal. They also found some more thrush in Rachel’s mouth and feel this might be causing her to throw up all the time lately. Her fluid levels were also not within the acceptable range for the kidneys and medication residue. She required another I.V. solution of fluids while at the clinic. She has been drinking fluids and is hooked up to the I.V. pump for solutions each night so we were a little puzzled as to why her levels were still high. The doctors explained that with the constant diarrhea that Rachel has been experiencing, she can become dehydrated because of this. This is a Catch-22 situation because almost all the medications that she is required to take can cause diarrhea as a side effect. So if we stop the medications her body could reject the transplant or get an infection. If we continue the medications she continues to become dehydrated due to the diarrhea and requires to be hooked up to an I.V. pump for 12 hours each night. So until we get this fluid level balanced I think we’ll just stick with the I.V. pump for now.

Rachel and I will be spending our Fourth of July morning at the clinic for another fluid level check. We are hopeful the levels will be within the parameters. Tomorrow night will be a little difficult for a fireworks show and Rachel’s energy levels. She becomes very tired at night and we are hoping to catch a fireworks display for all of the kids. Rachel also has to be at the hospital Thursday morning at 8:00 a.m. and undergo a bone marrow biopsy. This is to “check” on the bone marrow cells and the transplant. This procedure and the surgery will take up a good portion of the day on Thursday but shouldn’t be complicated.

I update date everyone on how everything go. Unless of course I can convince Mary Lou to write the webdate for a change. Yeah right, like that will happen we haven’t seen her since Monday at the Mall of America. Jim said to leave her there because she was in “her glory”. I wonder if she knows that we left her here??? Oh well, I hope everyone has a great Fourth of July and we’ll keep you posted.


Mel

Saturday, June 30, 2001 at 03:00 PM (CDT)

Day plus 58


Well here it is Saturday and we haven’t been to the hospital in 2 days, it is a nice break. Last night we were able to meet with another family from Connecticut who is here for a F.A. transplant. If I remember correctly there is only one other family from Connecticut that has a child with Fanconi Anemia. So what are the odds that 2 of the 3 families would be in Minnesota at the same time for bone marrow transplants?

Their 12-year-old son will be undergoing his transplant starting on Monday. Rachel tried to share with him some of the tricks of the trade of being on the BMT ward for the next month or so. Actually Chris will be undergoing a cord blood transplant. There were no matches anywhere in the world for him in the National Marrow Donor Program. But there was a 5 out of 6 match for him using the cord blood databank. The blood of newborn babies, also found in the umbilical cord blood and placenta after birth, is unique because it contains large numbers of blood stem cells. The new mothers are asked at the time of birth if they wish to donate the umbilical cord blood to the cord blood bank. The cord blood stem cells are then saved and used for people like Chris. We wish him the best of luck in his transplant process.

Rachel is doing okay with having the I.V. pump hooked up to her at night to increase her liquid intake. She is getting use to it. Last night she became sick twice after taking her medications. We think she was just over tired and doesn’t care for the taste of some of the medications. But this morning she became sick again for a few minutes and threw up once again. Ten minutes later she was fine so we will have to make sure this doesn’t develop into something else.

Tonight her and Michael are going to have a big surprise. Our neighbors are flying in to spend the week with us. They have two great children that are the same ages as Rachel and Michael, who haven’t been able to play with any other children since April. We haven’t told Rachel and Michael that they are coming to stay with us, so tonight when I drive them back from the airport we are going to have Rachel & Michael answer the door. The looks on their faces should be priceless.

Well that’s all the news from Minnesota for now. Hang in there gang. I can’t believe tomorrow will be July 1st (another month down and one to go :>)



Mel

Thursday, June 28, 2001 at 10:24 PM (CDT)

Day plus 56


Well today’s clinic visit went well considering it was suppose to be a quick checkup and it took about 5 hours before Rachel and I got back to the apartment. The delay wasn’t anything related to Rachel’s condition it was due to traffic, lack of parking spaces, and trips to the pharmacy for medication.

The clinic checkup showed that all of Rachel’s counts have dropped slightly. Her white count dropped to 6400, the ANC was 4200 and the platelets were 140,000. This drop isn’t surprising and there will be high and lows as we all know. The medication residue levels in her kidneys were down slightly so that was good news.

Rachel will have to remain on the I.V. pump at night until this level drops more. The doctor told me that it is not unusual for F.A. children to remain on I.V. fluids for a while after their BMT. The patients become accustomed to receiving fluids by I.V. it is very hard for their systems to adapt to drinking orally again. It is also not unusual for some patients to go home after day 100 and still require the use of I.V. solutions. Let’s hope that isn’t the case here but we will take one hurdle at a time.

Next week she is scheduled to undergo another bone marrow biopsy to check the marrow and cells. Otherwise we are hoping to stay out of the clinic until Tuesday. We also have a surprise coming up this weekend for Rachel and Michael but I’ll update you more on that later.

Keep smiling July is almost here !!!!!!! :>)


Mel

Wednesday, June 27, 2001 at 10:54 PM (CDT)

Day plus 55


Today was a day off from a hospital / clinic visit so it was a nice break. Rachel did fine on having the I.V. pump hooked up to her overnight. Her appetite seems okay, not great, but hey we will take what we can get at this point. She also hasn’t gotten sick today so that was another plus.

Thursday morning I have to take her into the clinic so we will see how the kidney fluid levels are and how her counts are doing. She is hooked back up to the IV pump again tonight and will receive fluids over the next 12 hours. So we are hoping that this will boost her fluid levels for tomorrow.

I would also like to thank everyone for their suggestions on how to make her drink a little more fluid. The “game” that has worked the best so far is the 99 bottles of beer on the wall song. So far she has only been able to drink 3 of the beers I have set up on a wall but give her some time. She is only seven years old and I didn’t really expect her to be able to drink a whole 6 pack like Michael does.

The weather here has been very hot so we make sure she always has something nearby to drink and limit her time outdoors. Actually the weather does feel nice here compared to all of the rain that has occurred. Do you want some more useless Minnesota trivia? Tuesday it was 97 degrees and that was a record since it hasn’t been that hot here since July of 1999. The weatherman said that Minnesota only has about 14 days a year when the temperature goes above 90 degrees. I sure hope we are out of here before winter because I think they call 20 degrees below zero a heat wave in the winter months. No thanks!!!!!!


Well that’s all for now, we will let you know how the clinic visit goes.



Mel

Tuesday, June 26, 2001 at 07:29 PM (CDT)

Day plus 54


Well just another day in paradise. Rachel went to the clinic for a short check up on her fluid levels and counts. The counts came in fine at 7800 for the WBC and 160,000 for the platelets. Her fluid levels for the kidneys were another story. All day yesterday and last night she was drinking her fluids to get the kidneys to flush the medication residues properly. Well this morning counts showed that the residue levels were actually higher.So she required a 2-hour I.V. fluid solution to help flush her kidneys. (So much for a short visit to the clinic)

So we will continue trying to get her to drink enough fluids. The doctors have now ordered that she be given the I.V. solutions for 12 hours each night. So starting tonight Rachel has to be hooked back up to a portable I.V. pump to receive the solutions.

To make things just a little more stressful now she is starting to lose her appetite. Tonight after taking over an hour to eat a small dinner and take 3 medications, she became sick to her stomach. So needless to say dinner and all the meds made a return visit in the bathroom. Hopefully this isn’t a sign of things to come.

Well we have to go get her hooked up on her I.V. pump and try the meds again………..


Have a good one.


Mel




(Hey Sue remember that t-shirt we saw at the Mall of America that pictured the cat with it’s fur standing on end and the caption read “Stressed out in Minnesota!!” I think I should have bought it :>)

Monday, June 25, 2001 at 10:28 PM (CDT)

Day plus 53


Well the clinic visits went well today. Rachel’s counts were very good. Her white count was 6300, the ANC was 4700 and her platelets remained steady at 147,000. Her fluid level in her kidney wasn’t at normal but I’ll address that later. Michael’s counts were a little different; his white count was 4600, the ANC was 800, and his platelets were exactly 100,000 lower than Rachel’s at 47,000.

The doctors don’t feel that this is the proper time to start Michael on any medications but will continue to monitor his counts. He has to return to the clinic in another 2 weeks for more blood work. While his counts are not high as they usually are at least they were rising slightly.

Rachel’s fluid intake continues to be a problem. Basically she is not drinking enough fluids and the medications are remaining in her kidneys. As you know this has been a problem for the past few weeks. This weekend we had to travel to the clinic each day just so she could have fluids added to her system. As much as we try to make her drink fluid it is becoming an everyday battle. She tells us that she isn’t thirsty and she takes about 45 minutes to drink a 4-ounce glass of water. She continues to “test” us each day and today the doctor told her that she must drink at least 4 ounces of liquid every hour. So that is our new goal to keep her from being readmitted to the hospital.

Hopefully tomorrow’s clinic visit will show an improvement in her fluid levels and she will start taking the fluids a little faster. Otherwise she is doing very well.


Mel

Sunday, June 24, 2001 at 12:15 PM (CDT)

Day +52

Well we have made it over the half way mark of our hundred-day journey!! 48 more days to go until the troops return to Connecticut. Mel is taking a well-deserved break from updating the website today and he is going to give me a break by mowing the lawn in Connecticut when they return in August. This weekend’s update is from the perspective of a weekend visitor, Auntie Suey.

The journey began on Friday with a trip back to the hospital for fluids, as Mel had mentioned on Thursdays update Rachel’s creatinine level was high when we brought her in for tests on Thursday, so the doctors ordered for her to receive fluids via IV everyday to reduce her levels. The doctors also backed off on her CSA medication on Friday which would help her kidneys however this is the anti rejection drug that she needs to take prevent her from rejecting her marrow, so you have to take the good with the bad as they say. Needless to say we tried to work around Rachel’s clinic visits as best as we could so we could enjoy the sites of Minnesota. Those of you planning a visit to the lovely twin cities in the near future please don’t go where we went to go miniature golfing. Rachel thought a nice family game of miniature golf on a lovely sunny day would be a nice treat so we packed up the car and headed off in search of a mini golf land that was advertised in the local paper, well to our surprise it was not the Vernon golf land that we expected, it was more of an older and run down version that should have been condemned 20 years ago. Needless to say we wished that we all had masks to wear like Rachel. Rachel and Michael did not care what kind of place we went to they were just happy to be kids hanging out with there family and enjoying a stop at Dairy Queen on the way home.

Saturdays visit to the clinic for fluids and tests showed that the creatinine level was beginning to drop, from 1.1 on Friday to .8 on Saturday. Hooray for small steps! We also tried to find any trick we could to get Rachel to drink more, we incorporated drinking into our Candy Land game, whatever it takes. The results for Rachel’s blood work on Saturday were white blood count 5700, ANC 4100, and platelets 139000. Speaking of platelets little Mr. Michael was showing signs of his low platelets this weekend, he is being retested on Monday to see if he needs to begin taking meds to help his levels. Seeing these signs of his low levels has made us all stop and think are we ready for this yet, are we ready to start this whole process with Mr. Mike??? But then again are we ever ready? Do we ever get to choose? I guess we just figure it out as we go on, pick our heads up high and hold on for the long roller coaster ride ahead of us. We never know what the next day or the next counts will bring so we just keep enjoying today and taking a break when we can. I gave Mel and Jackie a break last night so they could enjoy a Saturday night, I am not sure who had more fun them or me. Rachel, Michael and I enjoyed Willie Wonka and the chocolate factory, popcorn and pedicures; well Michael skipped the pedicure but sure enjoyed the popcorn.


Rachel visited the clinic again on Sunday for fluids; unfortunately here creatinine level rose to .9 since she is back to taking her CSA on schedule and not consuming enough fluids on her own. Today’s task will be to make her drink as much as possible which is difficult to do, those little taste buds are beginning to work again a little bit more each day and she is rediscovering her favorite foods again that tasted so awful to her a few weeks ago, she does not care for many beverages though, the girl who used to drink a gallon of milk now does not like it and will only drink water, Gatorade and strawberry milkshakes. The good new is that all the other counts were great!! The white is at 7300, ANC 5200 and platelets a whopping 150000 (if she could only share a few platelets with her little brother).

I also had the opportunity to play nurse and doctor this weekend, I gave Rach her 7:30 and 10:30 meds, which made me realize how much she truly enjoys being woken up to take meds, then again don’t we all. I played doctor when I was the head surgeon in Captain America’s operation. Those of you who know Mr. Mike know that he loves his little plastic action figure guys, he has a very extensive collection of guys (Batman, Digemon, X-men, etc). Captain America joined us for a swim in the pool on Saturday; Michael was trying to dry him off by gently tossing him on the ground, well as you guessed the last toss to the ground was a very dangerous fall even for a super hero. Captain America was now Captain pieces (6 different pieces), Michael was pretty devastated as CA had just flown in from Connecticut on Thursday so Miss Rachel had the bright idea of a small operation to glue him back together again. The surgery went well, we wore our surgical masks and used syringes to apply the glue. CA recovered overnight but unfortunately all the glue and the best super hero doctors could not put Humpty Dumpty (Captain America) back together again. Times like this make us all wish we either four again and this was the biggest problem that we had or that we were super heroes that could solve the world’s problems in a half hour cartoon.

Well I head back to Connecticut tonight so Mel will be back to writing tomorrow’s updates.



Sue

Thursday, June 21, 2001 at 11:56 PM (CDT)

Day plus 49


Rachel’s clinic visit went well today – almost. Rachel counts came in very good. Her white count was 6400, the ANC was 4300 and her platelets continued to rise to 148,000. She left the clinic and was almost on her way home with Jackie and my sister when the doctor called the apartment. They needed to get Rachel back to the clinic due to the levels of medication in her kidneys.

So I managed to get in touch with them and they had to return to the clinic for a few more hours. Rachel had to have another I.V. bag of solution to help flush the medication residue out of her kidneys. If the residue remains in the kidneys it can cause some damage to the kidneys and the kidney function. So we have to try and get Rachel to drink even more fluids then what she is currently drinking.

Unfortunately being a typical 7-year-old Rachel doesn’t always like to take her seven daily medications and drink fluids all the time. Sometimes it can be a little stressful struggle to accomplish this each day. So Friday I will be taking her back to the clinic for another fluid hookup.

Otherwise she is doing well and was very happy to see my sister, Sue who arrived today to visit for the weekend. Something also happened at the airport today when I was picking Sue up. Remember a few weeks ago how I wrote that being so far from home you are constantly looking around for people that you know. Well after 12 different trips to the airport and 2 ½ months out here, I saw someone I hadn’t seen in 10 years. He was on the same plane that Sue had flown in on and was here for a layover for the National Guard. We were only able to talk for a few minutes but I had been thinking of this person and his family a lot lately. His sister and brother-in-law were friends of ours. Unfortunately his sister developed leukemia and he tried saving her with his bone marrow. The end result was that it didn’t work and she passed away. I think of her often and now know first hand what they must of went through with the diagnoses, doctors visits, traveling to out of state hospitals, operations, chemo, and the uncertainty about the future. I now find myself as I type these words wishing I could go back 10 years and have helped them more in some way. I know her family will probably never see this but if they do I would like them to know that we have never forgotten about our friend and what she meant to us. I’m sure there is a red headed angel looking over all of us right now and smiling. I can’t picture her face any other way but with a smile. – God take care of her, she is a special one.



Mel

Wednesday, June 20, 2001 at 11:02 AM (CDT)

Day plus 48


Yesterday Rachel didn’t have to go to the clinic but we still had to go to the hospital so she could meet with her tutor. She will be attending summer school just to keep her up with her education and she can go into the second grade. Her tutor is very impressed with Rachel and how well she is doing at school.

While Rachel met with her tutor we made plans to meet with another couple from Connecticut that was here with their 2-year old daughter, Julia. They are here for a 3-day consultation. We had first met Patty in January when we came to Minnesota for our initial consultation. Julia was undergoing her bone marrow transplant at that time.
Rachel and I met Jay and Julia back at the Children’s Hospital in Hartford in February. There was a common bond between all of us.

So when we heard they were back in Minnesota for a few days we wanted to meet with them if they had some free time. Last night we were able to all have dinner together. Of course it was their first time meeting with “Crazy Mikey” but that didn’t scare them away. The kids had fun and it was nice to see some familiar faces. We wish Patty and Jay and their family the best of luck and all of our support. If you get a chance stop by Julia’s web page and lend your support. It is www.caringbridge.com/page/hopeforjulia

Have a good day and hang in there – Day 50 is almost here !!!!!! :>)


Mel

Tuesday, June 19, 2001 at 1:57 PM (CDT)

Day plus 47

Monday’s visit to the clinic was a mixture of good and okay news- I didn’t say bad news. Rachel’s counts were great, her WBC is 8,800, the ANC was up to 7500 and the platelets came in at a whopping 132,000!!! That was the good news.

Now for the okay news: Michael’s counts came in a little lower. His white blood cell count is 3,300, his ANC is a concerning 300, and his platelets were 41,000. If you remember from the other day I mentioned that he sounded like he was developing a cold. This could be causing the counts to drop this low because he is fighting something off. His cold hasn’t developed into anything (IF he even has a cold developing). Hopefully that is why the counts are dropping. We have scheduled another appointment for next Monday to have his counts checked again. We knew the platelets were probably dropping because in the past few weeks we have noticed he is bruising a lot easier then normal. This is usually a sign that his platelets are low. So far throughout his life he has not needed any type of medications or transfusions. With the counts dropping we will just have to wait until next week and see where the counts are before we start worrying about the next course of action. So we’ll just take one problem at a time for this week and see what next week brings us.

On other news we were able to meet with Chris Byrd and his mother, Peggy at the hospital. We had the pleasure of meeting Chris and his family last year in Florida. Chris has Fanconi Anemia and underwent a transplant in November of 1999. He was at the hospital yesterday for a routine checkup with his transplant but he is doing very well. After Rachel and Michael were diagnosed, Chris was the first person with F.A. that we met. He is an inspiration to us and answers a lot of our questions and openly shares his experience with us. He underwent his B.M.T. when he was 17 years old and gives us an educated viewpoint from the patient’s perspective. Sometimes the younger children won’t tell you when something hurts or something is bothering them. Chris can relate to the kids and explain exactly how something felt when he went through his transplant.

So we had the pleasure of spending the afternoon with Peggy and Chris before bringing them to the airport for their journey back to Florida. Chris and Peggy thank you both for always being there for us and answering all of our questions.

We are also happy to report that Nicole was discharged from the hospital yesterday afternoon. She is doing very well 17 days after her transplant. We wish her and her family the best of luck and hope to see them again over the summer. Nicole, Rachel and Michael had a chance to play together for a few minutes while we spoke with Nicole’s mother on the transplant ward. While there we also met another mother who has an 11-year-old daughter with F.A. and leukemia who will be undergoing her B.M.T. soon. We wish them the best of luck.

It is difficult to explain the feeling when you meet with a bunch of other parents who have seriously ill children. At one point yesterday there were was 7 of us standing together in the hallway talking. I recently read in another web site from another parent who child is undergoing a BMT for F.A., describing how most of a young child’s life is focused on other things. Kids should be playing outside, riding bicycles, drawing with chalk, and just being kids having fun. On the BMT ward this doesn’t happen. The parents don’t discuss girl scouts or cub scouts, chalk drawings, or playing outside. The discussions focus on blood counts, diseases, life’s cruel ironies, and life expectancies. But there is an unspoken bond between the parents and we try to help one another. Yesterday was a good day because we had the pleasure of meeting some others who share the same everyday burdens we do. Somehow we all manage to go onto the next day – not that we have much of a choice but it is comforting helping others get through the tough days. It is also very comforting seeing the successes of the Chris’and Nicoles' of the F.A. world.

Take care,


Mel

Sunday, June 17, 2001 at 10:41 PM (CDT)

Day plus 45

This weekend went by with no visits to the hospital or clinic, which was the good news. The sad news was that our friend Kate had to return back to Connecticut on Sunday morning. It was great having her visit and spend time with us. Of course I don’t think she will ever go on another roller coaster in which Mikey is driving :>)

Monday morning we get right back into the hospital groove. Rachel and Michael both have appointments for blood work and check ups. Michael was starting to get a slight cold yesterday but it seems under control today. We are praying that he doesn’t get sick and give the cold to Rachel.

Hope everyone had a good weekend and we’ll update you on how things go at the clinic. We are also hoping to meet up with a friend of ours from Florida. He is scheduled to be at the hospital tomorrow getting a physical. He had undergone a bone marrow transplant for Fanconi Anemia in November of 1999.


Take care gang,


Mel

Friday, June 15, 2001 at 09:48 AM (CDT)

Day plus 43


Rachel’s clinic visit went very well. She did require an I.V. fluid solution for an hour to flush out the medication residue in her kidneys. While she was having this done Michael and I gave Kate a “tour” of the hospital and the pediatric bone marrow transplant unit. We also checked on our friend Nicole who is 8 years old and recently underwent a BMT also for Fanconi Anemia. We are happy to report that Nicole is doing great and will possibly be discharged from the hospital next week. We can’t wait to have Nicole and her family over to visit. Nicole has always wanted to talk with another girl around her age about F.A. and the whole treatment process. It will be very nice to get the two girls together and let them each know that they are not alone in this world when it comes to F.A. and dealing with everything from the medications to the BMT process.

When we returned to the clinic Rachel’s count was completed. Her white blood count is 4800 and those little old platelets are continuing to rise. They are up to 108,000!!!!!!!!
This is great and everyone is very happy with it. Her marrow is doing great and on the right track. So with the counts that high we don’t have to return to the clinic until Monday. Michael is scheduled to have his counts checked that day also so we can do both visits at the same time.

While I’m discussing the clinic I thought I would also share with you some people who have made a big difference in Rachel’s (and our) lives – the doctors. Some of you have been asking for pictures of Rachel without the mask on. So check the photo album for new photos. There are pictures of Rachel with the doctors who will always have our eternal gratitude and respect: Dr. MacMillan, Dr. Orchard, and Dr. Tolar. These doctors are not only great doctors but they take the time to talk with each of us. They not only treat the patient but they take time to treat the family because we all go through the BMT process. So a big thank you goes out to Dr “Marathon”, Dr. Orchard, and Jakub. Thank you for everything you have done for us. It will never be forgotten.

After Rachel’s clinic visit we took Kate to the Mall of America. The kids love the place and we are limited as to where we can take Rachel at times. So we try to go to places during off peak times. While we were at the Mall there was a small “incident” on the mini roller coaster. A 4-year-old boy managed to take the controls over and gave the other passengers a slight scare. Luckily we had our camera handy and I was able to get a picture of this. I included the photo in the photo album.

Well I wanted to get this webdate done and posted before we went out for the day.

Take care and keep smiling :>)


Mel

Wednesday, June 13, 2001 at 09:21 PM (CDT)

Day plus 41


Rachel’s clinic visit went well this morning. Some of the chemical levels in her kidneys were still on the high side so she had to be hooked up to I.V. fluids for an hour. This was to flush the cyclosorine medication from her kidneys so it doesn’t cause any damage.

She will have to visit the clinic again tomorrow to have the levels checked again. But she is happy the appointment isn’t until 12:00 so she can sleep late. Last night was a tough night for everyone to sleep due to a very large thunderstorm that was in the area for the entire night. The lighting strikes were so close to the apartment they were illuminating the interior of the apartment even though the blinds were closed. But we are trying to get adjust to the Minnesota weather. On Monday there was another large storm with several tornados nearby. The weather forecasters were discussing the tornados and stating that Minnesota usually averages about 20 tornados per year. So far they have had 20 and this is just the start of the season. So it should be an interesting summer.

Today since the weather was overcast (and tornado free) so we took the kids to see the movie Shrek. It is a very good animation type movie that will keep the adults laughing with some of the humor. The kids enjoyed it and Rachel didn’t mind having to watch the movie with her mask on. She is adapting quite well to having to wear the mask in public.

That’s about it for today. Tomorrow our friend Kate is coming in for a visit for the weekend. So we are looking forward to that.


Hang in there :>)


Mel

Tuesday, June 12, 2001 at 11:45 PM (CDT)

Day plus 40


Rachel’s clinic visit went very well. Her white blood count rose to 4700 but the extremely great news is that her platelet count rose to 81,000 This means her body is producing the platelets on it’s own.

The sores in her mouth are still there but not bothering her as much. The thrush is also clearing up. She is doing well eating but not drinking as many liquids as the doctors would like. This causes a problem with one of her medications, which stays inside of her kidneys due to the low fluid intake. So Wednesday morning she has to go back to the clinic for a check of her levels. If they are still high then she will be hooked up to an IV bag of fluids to “flush” her system of the residual medications. Hopefully this will correct the problem.

Otherwise a quiet and long day so I’m going to get some sleep. Have a good one.


Mel

Monday, June 11, 2001 at 07:44 PM (CDT)

Day plus 39


Rachel’s visit to the clinic on Sunday went very well. Her blood pressure was well within the normal range. Her counts came back very good. Her WBC was 3100, which had dropped slightly but that was expected. The good news was that her platelet count had jumped up to 60,000. The booster shot she received last week would only affect the white blood cells not the platelets. So this looks like a very good thing and her body might already be producing platelets on it’s own without the need for constant transfusions.

The clinic visit was also very nice because we had a chance to show our friend Sharon around the place. She keeps up with the updates everyday and now had an opportunity to see firsthand all the places and things that we see everyday. It just made the usual trip to the hospital a little more special because we got to share it with someone.

The rest of Sunday afternoon we took Sharon to the Mall of America. It is a Minnesota law that when you visit the State you are required to shop at the Mall at least once. We spent the afternoon there and still didn’t see the whole Mall but everyone had a good time.

This morning I had to drive Sharon back to the airport for her flight. We tried bribing her to stay a little longer but she couldn’t. It was sad seeing her leave knowing that we wouldn’t see her for another two months. But the time we had together was great and made things out here a little more bearable.

Which brings me to some good news for everyone counting the days on the calendar (okay no one probably is but just work with me here for a minute) Today being June 11, 2001 brings us to the half waypoint of our time here. A crazy Queen (of Ellington) that we know pointed out this fact to us the other day. Surprisingly what she said made sense (for a change) and made us feel a whole lot better. We arrived here in Minnesota on April 11th and we possibly get to leave on August 11th. So today is the official halfway point and the rest of the days are all “down hill” until August 11th !!!!!!!! :>) :>) :>) :>)

So I will now close with that good news and will update you tomorrow on Rachel’s clinic visit.


Mel

Saturday, June 09, 2001 at 10:44 AM (CDT)

Day plus 37


Rachel’s blood counts drastically improved on Friday due to the “booster” shot of GCSF. Her white count went up to 7100 and her platelets remained at the 42,000 mark. The ANC level wasn’t completed by the time Jackie and Rachel left the clinic but it is probably higher than it has ever been due to the GCSF.

Her blood pressure was good. The thrush problem in her mouth had not started to clear up so she was given a prescription to help with this. Hopefully the thrush was caught early enough and will not develop into an infection. Rachel has to return to the clinic on Sunday for a checkup on her blood pressure and counts.

On other news, our friend Sharon flew in to spend the weekend with us. I don’t know who was more excited, the kids or us. It was great seeing a familiar face and being able to talk face to face. I don’t know how to accurately describe how it feels to be 1300 miles away from everyone. It is nice being able to keep in touch through e-mails and phone calls but it is not the same as talking with someone in person.

When we first arrived out here 62 days ago, we would automatically look around for people that we knew. It is just human nature to do this. But after a while you realize there is no one out here that you know and you are truly on your own. After a few weeks of this you start looking at people and thinking to yourself that a person you see reminds you of a person back home. I guess we do this to make ourselves remember everyone and to make ourselves feel like we are back home.

So when Sharon arrived yesterday it was a great feeling of having a “piece of home” brought out to us. I don’t think that I described this properly but I hope the feeling / meaning came across. We are also happy that this month we are going to have a lot of people coming to stay with us. It helps pass the time and gives us a chance to show them the sights. It also helps us to lean on our friends during the difficult times.


Thanks for letting us lean on all of you.



Mel

Thursday, June 07, 2001 at 10:04 PM (CDT)

Day plus 35

Well the clinic visit went okay today. Rachel’s platelet count went up by itself to 42,000 so that was very good news. The white blood count continued to drop to 1800 and the ANC hit the cutoff point of 1000. Anything below 1000 is not great and means that she could be more prone to infections. So she was given a booster injection of GCSF to help the ANC rise again. The doctors have said this is not unusual. A small amount of mucus was found on Rachel’s tongue. It is very similar to thrush that infants sometimes get. This will have to be monitored to make sure it doesn’t develop into an infection.

The doctors also cut back on Rachel’s high blood pressure medication. I realize some of you think that she is probably taking this medication because I’m her father. Well normally that would be the case but this time it happens to be medically induced. Some of the medications she is required to take elevate her blood pressure. But over the past week her blood pressure has been leveling off so they reduced the dosage.

She does have to return to the hospital tomorrow so they can monitor her blood pressure. She also has to have her Cyclosporine (CSA) level checked again. This medication is used to stop specific white blood cells that are involved in the rejection process and prevent the graft versus host disease (GVHD). Today her CSA level was a little higher then the normal parameters.

Okay now that I have bored you with all of the medical stuff let me share something that will make you feel good and put a :>) on your face. On Monday we went to the Mall of America with my Mother-In-Law. Rachel and Michael were very excited about showing Grandma around the mall. So we rented a wheelchair for Rachel to use because she doesn’t have the energy to walk around that far. She also had to wear her mask at all times to avoid air borne particles and germs. We also have to avoid crowds due to the possibility of germs. The kids did get to go on a few of their favorite rides at Camp Snoopy. That is the name of the amusement park located in the center of the mall. I put a couple pictures of their adventure in the photo album. The kids enjoyed themselves and you could see Rachel was enjoying herself being out in the “public” again instead of a hospital setting. It was a very nice change.

We will see how tomorrows hospital visit goes but in the meantime take care,

Mel

Thursday, June 07, 2001 at 12:29 AM (CDT)

Day plus 34


We are happy to report that there is not much to report with Rachel. The past two days she has been eating more and slowly regaining her energy. Tuesday, Jackie’s Mother went back to Connecticut. She was a very big help with the kids and making home made meals. She enjoyed seeing the kids playing together and acting like themselves.

Wednesday was another raining day so we just relaxed a little. Rachel had to go to the hospital in the morning and meet with her tutor. She then came home and spent the day playing with Michael. You could see a big difference in her energy level. Tuesday she took a 3-hour nap but on Wednesday she stayed awake all day.

This morning I will be taking her to the hospital to have her counts done and meet with her tutor. Hopefully her ANC level increases, it was rather low on Monday. Also her platelet level needs to be checked. Otherwise she is doing very well and getting back to her old smiling self.


Mel

Monday, June 04, 2001 at 08:35 PM (CDT)

Today was another good day at the clinic. Rachel’s white count was 2200 and her ANC was 1300. They have dropped a little but the doctors say the counts will fluctuate and that this is normal. Also, her platelets are holding their own. She has not had a transfusion in over a week. The other good news is that the doctors took Rachel off of her IV nutrition. She has started to eat on her own and the doctors were pleased with her progress. So now we have a few more days off. We do not need to go to the clinic until Thursday.

We ventured out to the Mall of America today. Rachel wanted to show Grandma how big the mall was. Grandma was pretty impressed and she couldn’t believe that there was an amusement park right in the mall. As always, the kids got spoiled by Grandma and came home with bags of new toys.

Well, since Grandma is leaving tomorrow, Mel and I are going to take this chance and go out to the movies again tonight.

Have a good day!!!!

Love Jackie

Sunday, June 03, 2001 at 06:23 PM (CDT)

Day plus 31 (Sunday June 3rd)

Well I’m happy to report the weekend was uneventful. It was a very nice break from having to drive back and forth to Minneapolis everyday. The hospital is about 18 miles one-way and it is not a bad drive but it is nice having a day off after a month and a half.
Let’s hope I remember how to get there tomorrow morning when we have a clinic appointment at 9:30 a.m.

Rachel has begun eating more solid foods. It must be her Grandmother’s cooking. Jackie’s Mom has been cooking whatever Rachel wants to eat. Rachel also is tired of lugging around her knapsack filled with the I.V. bags of nutrients that are connected to her central line. Hopefully tonight’s dose will be the last one.

Rachel has been feeling a little better but doesn’t have all of her energy back yet. Yesterday her and I walked across the street to the Blockbuster video store and she took an hour nap when we returned to the apartment.

Today it was a nice day and the kids wanted to go to a nearby plays cape. So this afternoon we took them there for about an hour. We didn’t want Rachel to tire herself out too much because she would take a nap and then be up until 3 a.m.

I took some photos of them at the plays cape so you could see them enjoying themselves. Photos are in the photo album. It was funny watching all of the adults’ wonder why Rachel was wearing a mask. But no one including the other children made any comments or treated her differently. If they had next time I will put some biohazard stickers on her clothes and tell the other kids and parents they might not want to be near her. This would clear out the plays cape quickly and she and Mikey could have the place to themselves. They did have fun just being themselves.

We will get the counts checked tomorrow morning and we will check with the doctors about discontinuing the I.V. bags.


On another note: To my two brothers back home in Vernon. I cannot tell you how helpless I feel being out here in your time of need. I wish I was there right now. But please know that we are with you and are very thankful for your well being. Lean on the rest of our "family", they will get you through the tough times ahead. Stay Safe my brothers and sisters.


Love,

Mel

Friday, June 01, 2001 at 08:22 PM (CDT)

Day plus 29


This morning Jackie took Rachel to the clinic and it seems that Rachel’s counts are doing well. Her white count was 2800 and the ANC was 2200. Her platelet count only dropped to 35,000. This is a very good sign because she has not had a platelet or blood transfusion since Monday. Her temperature has also returned to normal.

The doctors were happy with her progress and also that Rachel was beginning to eat more solid foods. They have reduced her I.V. nutrients from 14 hours down to 12 hours. If Rachel continues eating well then there is the possibility of taking her off of the I.V. bags by Monday. This would make things a little easier. She will still need to take the 7 other medications daily but that is part of the requirements for the BMT process.

So we do not have to return to the clinic until Monday pending an unforeseen fever. So let’s hope the weekend is uneventful. By the way the nurse’s strike has been postponed until Monday unless a deal is struck over the weekend. Which looks like it might occur so that would be one less thing to worry about.

Well not much else to write about today (which probably is not a bad thing huh?)



Keep Smiling


Mel

Friday, June 01, 2001 at 12:42 AM (CDT)

Day plus 28


Rachel’s first night home felt like we were still at the hospital. She got up six times during the night to go to the bathroom and had to wake us up each time to tell us. Overall she did very well and loved being home.

This morning I took her to the clinic for her daily counts and exam. Remember I told you that the number we are concerned with when dealing with her temperature was 100.5? Anything higher then this number means she gets readmitted to the hospital. Well guess what her temperature was this morning when we were sitting in the clinic? It came in at 100.2 Well, suddenly visions of being re-admitted to the hospital after being released less then 24 hours before flashed through my head. So the doctor said we should have her blood drawn and set to the lab for another culture examination. This was done and we should have the results in 2 days. Luckily a few hours later Rachel’s temperature dropped down to 99.5 (must have been that cold pineapple juice I had her drinking before they took her oral temperature – works every time :>) Her white count came back at 3500 and her ANC wasn’t available by the time we left the clinic.

We were back in the apartment by the early afternoon and Rachel actually had some things to eat. This is a big step because the sooner she starts eating more the sooner she can stop having the I.V. bags of nutrients.

Tonight she was running a slight temperature of 100.2 again so we will be checking her throughout the night. One thing I should mention why we are worried about her being re-admitted to the hospital, besides the obvious facts, is that there is a possible nursing strike starting tomorrow morning. Approx 7700 nurses in the Minneapolis and St. Paul area are threatening to go to strike over contract negations. The hospital we are at is not involved in this but it could effect us. The 12 or more effected hospitals could be closed or have replacement nurses brought in. This will mean that our hospital could get a very large overcrowding of patients from the effected hospitals. This translates to possibly no beds available and the currently over worked nurses having to take on more patients. Not a good situation for anyone.

On other news from yesterday I did not get a chance to mention that we finally met another family with Fanconi Anemia. We had the pleasure of meeting a little girl close to Rachel’s age named Nicole. Out of respect for their privacy I won’t put any additional info on the page. We spoke with Nicole’s Mom for a few quick minutes. We will be saying a prayer for Nicole as she is going to receive her related bone marrow transplant tomorrow (June 1st). We know that everything will go very well and wish her and her family the best. We will be checking in with Nicole and her family to see how everything is going and if they need anything. It was too bad that we met them literally while we were being discharged from the BMT unit. We wished we could have spoken with them longer, but we will in the near future.

Just to clarify two points because some people have been inquiring. First we can’t return to Connecticut until around day 100. Between the transplant day and the first 100 days afterwards is when the most problems arise from the transplant. Rachel’s immune system is still too fragile and she must be closely monitored during the 100 days.

The second and perhaps the most important point is the bone marrow transplant and Fanconi Anemia. The B.M.T. does not cure Rachel from the disease it only stops the bone marrow failure. People with F.A. are at an increased risk of cancer and other life threatening problems for the rest of their lives. I know that some people thought this was a cure for Rachel’s disease, I could only wish it were that easy (not that any of this is easy). What also makes it difficult is knowing that Michael will someday have to follow in his sister’s footsteps.

I would also like to thank everyone who signed the guestbook today with all of their enthusiasm. It was very nice. I will be honest and tell you that doing these updates sometimes takes it’s toll. I know that a lot of people read them daily and have commented about how they feel a part of this process. It is very difficult to sit down every night and open your life up for everyone to read. I do try to keep a lot of the negative aspects of the B.M.T. process out of the updates, so it was nice to read everyone’s joy about the good news. I also posted a new picture of some smiling kids I thought you might like to see.



Mel

Wednesday, May 30, 2001 at 11:16 PM (CDT)

Day plus 27


Well for everyone the reads these updates everyday you will finally be rewarded with some good news for a change.

So first we’ll start off with the number 100. Any guesses as to the significance of this number? If you guessed it is the number of days we have to stay here in Minnesota you are correct but it doesn’t apply for this question. No the number 100 did not apply to Rachel’s daily counts (those were 2300 WBC and 1900 for the ANC). If you had guessed the number 100 applies to the results of Rachel’s DNA test then your mojo is working!!!!

The preliminary results of the RFLP test showed that Rachel’s bone marrow is a 100 percent from the donor. We should have the final results in a few days but they are not expected to change. This means that the transplant did work and so far has been successful. There is always a chance of GVHD (Graft versus host disease) but with 100 percent marrow it brings the odds more in favor of success.

The second great piece of news was that Rachel was granted parole today. Oops I meant to say she was discharged from the hospital. (Well it felt like the same thing). After being in the hospital for 35 days she was allowed to leave and come back to the apartment. So after packing up her room, meeting with the doctors, going over all the medications she will need, and saying our goodbyes to the staff --we were out of there!!! Rachel was so excited about leaving and driving home that she fell asleep in the car.

It was great having her back at the apartment. I think Michael was more excited then Jackie or I. He had his big sister and roommate back. The two of them were laughing and playing together like they had never been apart. Tonight they asked if they could stay up a little later and watch the end of a Scooby Doo movie while they lay in their beds? How could you turn them down? They both have been through so much together and actually deserve a little break from the old hospital “routine”.

When we arrived home this afternoon we didn’t get much of a break. Within two hours the nurse from the home health care was at the apartment with two very large bags of medical supplies. We then had a 2-hour class on how to administer Rachel’s I.V. nutrition bags, clean and flush her central line. She will remain on the I.V. bags (aka TPN) until she starts eating more solid foods. She has to have the I.V. bags hooked up to her from 7:00 p.m. until 9:00 a.m. every night. But the fears of having a rolling I.V. pole where unfounded. The I.V. bag, battery powered pump, and the tubes all fit inside of a backpack that she can carry around or put next to her bed. So she can move around fairly easily with it. Hopefully she will only need this for a few weeks.

Well I have some other things to tell you about the day but I’ll save them for tomorrow’s web date (my new word for web page update). We have to have Rachel back to the hospital Thursday morning at 10:30 a.m. for her now daily clinic visits and meetings with her tutor. So I have to get some sleep.

Take care and thanks for taking the time to read these everyday and keeping us in your thoughts and prayers.


Mel

Tuesday, May 29, 2001 at 10:40 PM (CDT)

Day plus 26

******5/30/01 6:50 p.m. Rachel was discharged from the hospital this afternoon. I'll update the page later tonight*******

Rachel is doing better today. Her temperature has been hovering in the mid 99-degree area all day. Tonight around 8:30 p.m. it was back to normal. So let’s hope it continues to be normal and then MAYBE she can be discharged from the hospital tomorrow.

Her white cell count was 3100 and the ANC was at 2300 so they did drop from yesterday. (Maybe her body has fought off the infection???) But the counts will vary from day to day.

We were told tonight that the blood cultures taken on Sunday night have not shown any indication of an infection. So if those stay clear and her temperature remains normal it would be good news. The results from the marrow DNA test are not in yet we might have them tomorrow.

On other news Jackie’s Mom arrived here today. She will be staying with us for a week and helping us out. Michael and I went to the airport and picked her up and drove straight to the hospital so she could see Rachel. As we were outside walking towards the front of the hospital a person wearing a mask and a pink Powerpuff Girls hat ambushed us. Rachel and Jackie were outside waiting to surprise us. Rachel had been disconnected from her I.V. pole and was allowed outside for 15 minutes. Needless to say Grandma was very happy to see Rachel acting very much like her old self.

The rest of the afternoon Grandma received the tour of the BMT unit and Rachel’s room. Afterwards we headed back to the apartment with Michael. If Rachel isn’t discharged from the hospital tomorrow then Jackie and I are going to switch places and I’ll stay overnight at the hospital. This way Jackie can relax a little with her Mom and Michael at the apartment.


Take Care,


Mel

Tuesday, May 29, 2001 at 12:29 AM (CDT)

Day plus 25

If you read the earlier update then you know that Rachel is still in the hospital and was not discharged today. Her temperature varied today between 99 and 100. It has not risen over the 100.5 mark since last night. She is also back on the I.V. antibiotics so this might be helping to keep the temperature lower.

On the brighter side she was allowed to be disconnected from the I.V. pole for about an hour today. So we took her and Michael outside to the small playscape the hospital has. It was her actually first time outdoors in 33 days. The weather was very nice and she didn’t mind having to wear her mask and hat. Michael had a great time playing with her even though she was only allowed outdoors for 15 minutes.

We went back to her room and she was reconnected with the I.V. pole and the medications were continued. But it was nice to see her enjoying herself outdoors for a change.

Tomorrow we might get the results back from the bone marrow aspiration that was done on Day 21. But this isn’t confirmed yet so we will just take each day slowly while we awaiting the DNA tests, Rachel’s temperatures, the lab results from the blood drawn yesterday, the daily blood counts, and of course when she can be discharged from the hospital. NO stress here.


Hang in there and we will keep you posted.



Mel

Monday, May 28, 2001 at 10:27 AM (CDT)

Day plus 23 & 24 (update for Sat 5/26 & Sun 5/27/01)


Well the weekend started off nice despite the rainy weather. Rachel’s white count was at 2800 and her ANC was at 2400. So this was good and we were excited because she also wasn’t running any fevers and her counts were continuing to rise. This was some of the factors needed so she could be discharged from the hospital on Monday.

They also continued to lower the morphine doses so by Saturday night she was completely off of it. If she was still on the morphine she could not be discharged from the hospital. So we were gaining on the small steps towards discharge.

Saturday afternoon Rachel and Michael had a surprise visit from a clown. No it wasn’t their father, it was some guy named Ronald McDonald. Actually when he walked into the room Michael became very upset and frightened and clung to Jackie. Rachel was so excited by the surprise visit that she did not even wake up. So we did snap a few pictures (which are in the photo album) just in case Rachel did not believe us about the visit.

When Rachel awoke from her nap she was in a great mood and played with Michael the rest of the afternoon. Like I have written in the past few days, she is becoming stronger each day and getting back to her normal playful self. We have also started taking all the gifts everyone has sent out of Rachel’s room and bringing them back to the apartment. Otherwise on Monday there would have been no room for Rachel and Jackie in the car.

This brings us up to Sunday. Well I was hoping to have some great news that would knock your socks off and tell you she is being discharged from the hospital. Well things are on hold for now. (I had written this portion of the update Sunday evening)

Saturday night Rachel didn’t sleep well at all and was up every half hour going to the bathroom. She also has started running a high temperature. If her temperature went above 100.5 then she would not be discharged from the hospital. This is for several reasons. First as of Saturday night she was no longer getting antibiotics through an I.V. She was taking all of these medications orally. This is a requirement for her to be discharged. Which brings us to the related problem. If she started to have a temperature over 100.5 then it could mean she is fighting off an infection and will have to go back to having antibiotics through an I.V., which means she does not get discharged from the hospital.

Sunday morning her counts had dropped. Her white blood count was 2700 and her ANC had dropped to 2100. So Sunday was spent watching her temperature. It varied between 99.2 and 100.2 throughout the day. Towards the end of the day her temperature was down to 99.8. But she also wasn’t herself. She slept most of the day and was complaining of being cold all day.

We were hoping the temperature would stay down because everyone was looking forward to leaving the hospital. She had been there for over 32 days and it has not been easy. It has been a long and draining month and it would be great to have her back at the apartment.

Well as luck would have it, her temperature went to 100.7 last night around 11:00 p.m. So now it was officially a fever and she had to go back on the I.V. antibiotics. They also took blood samples from her, which will go to the lab for further examination. Cultures will be done on the blood to see if there is in fact an infection she is fighting off. It takes approximately 2-3 days to see what the cultures develop. So she will not be getting out of the hospital for at least 2-3 more days. If the cultures show an infection it could be several more weeks before she is discharged.

As of this time right now we don’t know when she will be discharged. But her counts this morning were 4700 for her WBC (white blood count) and 4200 for her ANC. Since we all have been learning about white cells and know they fight off infections what do these numbers tell us? Well since they have almost doubled in 24 hours I would say it was safe to say that her body is trying to fight off some type of infection. But I’m not a doctor I’m just an exhausted parent who hasn’t gotten much sleep this weekend :>)

So we will keep you posted on how things develop. I’m sure it will be a long and hard day but we will get through it moment by moment. I have to get ready to go to the hospital and also have to break the news to Michael that Rachel won’t be coming home today.

Hang in there and if you get a chance peruse the photo album, it will make you smile.



Mel

Friday, May 25, 2001 at 08:56 PM (CDT)

Day plus 22


Well guess what those little old white cells did today? For the first time they actually went up on their own. This means that her body is making the white cells without the assistance of any medications. The white blood cell count was 2500 and the ANC was 2300. Let’s hope this continues.

Rachel’s mouth sores are getting better and she is slowing beginning to eat soft foods again. She isn’t eating much; for example yesterday she had a Popsicle and some pudding. Today she wasn’t in the mood to eat anything. She is still receiving the nutrients through the I.V. lines and will continue this after being discharged from the hospital.

They are cutting back her morphine doses very slowly so she doesn’t go into withdrawals. If the schedule continues and she experiences no more pain then she should be off the morphine by Saturday night. This would be very good because it would be one step closer to getting her discharged from the hospital.

The doctor told us this morning that the lab did not find any abnormal cells from Rachel’s bone marrow aspiration yesterday. This was good to hear and we won’t know the FLRP marker results until late next week. Hopefully with the holiday being Monday that this doesn’t delay the findings until the following week. But if it does than so be it. What is done is done and we can’t change the results. We will just wait until the lab reports their findings. The doctors do feel that MAYBE Rachel can be discharged Sunday or Monday but we have to see how the counts continue, no fevers, and a few other things.

Today we also had a class on home health care for BMT patients. Basically it is common sense on germs and activities that she can and cannot do. They also told us that there would be some days where Rachel has a lot of energy and others where she is extremely tired. We also have to avoid crowds and Rachel will have to wear her mask when we are outdoors or in the public. This is only until her immune system becomes stronger.

She is becoming more comfortable with her new look. She was actually joking around and letting Michael rub her head. I told her we could paint some red horns on it for Halloween and she thought that was funny. At one point she was having her central line dressing changed and Michael was up on the bed next to Rachel. He was assisting the aide change the dressing. Rachel thought it was fun and I told Michael he should rub Rachel’s head for luck. So he began rubbing her head and she started laughing and relaxed a little more during the changing.

Tonight she was back to herself a little more and after a little coaxing she sat up in bed and was playing games with Michael. It was fun to watch the two of them playing together and laughing like old times.

We also posted some new pictures in the photo album of Rachel with some of the staff.

Have a great Memorial Day weekend everyone. Hopefully the weather will improve. It has been raining and cold (in the 40’s-50’s) here since Monday.


Mel

Thursday, May 24, 2001 at 10:43 PM (CDT)

Day plus 21


Well today was the magic day 21. It was the day that the bone marrow aspiration was done on Rachel’s hip. The procedure involves putting Rachel to sleep and while she is out the doctors inserted a small hollow point needle into her hip and into the bone to remove a small piece of marrow. The procedure was performed in her isolation room and took about 45 minutes. Rachel slept for several hours afterwards until the sedatives wore off. She was fine this afternoon and was playing with Michael for the first time in weeks. So she is starting to feel like her old self again.

The laboratory will examine the marrow that was removed from her hip. They will be searching for the RFLP markers in the DNA to determine if they belong to the donor or Rachel. If it belongs to the donor then that is great news and means that her old immune system was totally suppressed and the donor’s marrow is engrafting into her system. If the results show that it is Rachel’s old immune system this will lead to problems. We don’t expect this and feel that the donor’s marrow is working. We will not get the lab results for at least 5 working days. If the DNA cannot be determined then we have to wait until day 60 to undergo another aspiration. So we will just have to wait and hope for the best.

We did ask the doctor if the marrow belongs to Rachel’s old system could she undergo another bone marrow transplant? The answer was yes but not for a minimum of 6 months. We would be allowed to return to Connecticut while Rachel’s immune system wasn’t working fully. She would be transfusion dependant to maintain her immune system and then we would return to Minnesota and undergo the process again. They could also use the same donor if he was willing to undergo the procedure again. But hopefully none of this will be necessary.

Rachel’s counts did drop again today. Her white count was 2300 and the ANC was 1900. We are keeping a close watch on them because they shouldn’t drop much lower. If they drop to low then it means Rachel might not be discharged from the hospital next week. But that is to far off to think about now. One day at a time and one problem at a time.
Have to get some sleep.


Mel

Wednesday, May 23, 2001 at 10:51 PM (CDT)

Day plus 20


Not much was going on today. Rachel’s counts have dropped down. Her white count is 2700 and her ANC is 2600. They don’t believe the counts will drop much lower. She did have a slight temperature today but by the evening her temperature was back to normal.

We have been closely watching the counts and praying for no fevers. These are two of the conditions that will dictate when she can be discharged from the hospital. If everything goes as planned she might be able to leave the hospital this weekend or Monday. But there is a lot for us to learn and do in the meantime.

Jackie went through a one-hour class on how to use the I.V. feeding tubes. Rachel will have to be on this for a few weeks after discharge. Rachel will also have to take about 7 different medications every day (one of them is 5 times a day). There is also the task of changing the I.V. lines, cleaning the tubes, changing dressings, and a bunch of other tasks that go along with the central line. Any nurses out there looking for a full time job in Minnesota for the next 3 months? The job includes room and board and Michael will let you be his Nintendo partner :>)

Once we are back in the apartment, we will have someone from the home health care stop in and teach us some more procedures. Speaking of the apartment, Michael and I began to sterilize the place today. It has to be germ free for Rachel’s return due to her very low immune system. So the place is going to be spotless when she returns. And yes ladies, Michael and I will do windows and we are available on weekends.

Rachel is undergoing a bone marrow aspiration tomorrow morning. A sample of her marrow will be removed from her hip so the DNA can be examined. This will tell us if the marrow is hers or the donor’s. Let’s hope it belongs to the donor. I will cover more on that in tomorrow’s update.


Stay Strong,


Mel

Wednesday, May 23, 2001 at 12:48 AM (CDT)

Day plus 19


Well as predicted Rachel’s white counts have dropped. Her white blood cell count is 5,000 and her ANC dropped to 4,400. As I wrote in Monday’s update this drop was expected.

Her spirit is a little better and she was awake longer today. She did not get sick today so that was a real positive indication of how she is feeling. She was disconnected from her I.V. pole today for one hour. It was the first time in a few weeks that we didn’t have to wheel the pole around with her and it was a big relief. As everyone saw in the photo album the I.V. pole is very large and top heavy. When wheeling it around you have to be careful not to be more then 4-5 feet from Rachel otherwise it could rip the attached line out of her chest. So to have this one-hour of freedom from the pole was a nice change. Rachel walked around the ward for a while and then was able to take a shower without the I.V. pole and attachments before being reconnected.

Her appetite has not increased that much and she is still receiving most of her nutrients through the various I.V. bags. We inquired with the doctors if this would prevent her from being discharged from the hospital soon. There are certain steps that must be accomplished before she can be discharged. They would like her to be eating more but it isn’t required. She could be discharged and we will just have to set up an I.V. pole at the apartment for her when she sleeps and give her the nutrients through her I.V. Remember the part where I mentioned the pole is top heavy and hard to wheel around? Well, that is on tile floors I can image how easy the pole will roll around on the carpeted floors of the apartment. But if that is what it takes to get her back home then so be it. After everything else that has happened, that will be very easy to deal with.

I forgot to mention in yesterday’s update that the rest of Rachel’s hair is gone. After the chemo and radiation she had lost about 90 percent of her hair. The parts that were left were very long, thin, and in small clumps around her head. It gave her the appearance of being very, very unhealthy. The doctors told us that she would not lose the rest of her hair and it should start to grow back in about 3 weeks. The problem would be that it would grow at different lengths because of the hair that was left. So we asked Rachel if she wanted to have the remaining strands shaved off and she said yes. This was done yesterday and what a difference in her appearance. She looks a lot better and let us take her picture without a hat on. She also said she did not care if the photo was posted in the photo album for everyone to see. When you look at the photo keep in mind that she is the same little girl now she just looks more like her father. Of course she has the luxury of having her hair grow back :>)



A Father who is very proud of his Brave Daughter

Tuesday, May 22, 2001 at 08:35 AM (CDT)

Day plus 18 (update for Monday 5/21/01)


First we will start off with the white count because I know that’s what we have all been watching. Can you say…………..6,200 for the white count and 5,900 for the ANC!!!!!!
The numbers are continuing to rise so that is very good. Within the next day or so they will be discontinuing a medication that helps to simulate the white blood cells. This means that her counts will begin dropping but the doctors don’t expect the counts to drop below the 2,000 mark. This will also give us a good indication exactly where Rachel’s own counts are and not the “simulated” counts. So expect a drop in the counts soon, hopefully they just don’t drop to low. (Don’t you wish it would be this easy to predict the rise and the fall of the stock market?)

Rachel was a little tired today and didn’t have enough energy to do laps around the nurse’s station. She did meet with her tutor and did very well on her homework. This afternoon she became sick and was throwing up a few times. We don’t know what is causing this and hopefully it is just a minor thing. One thing we are constantly watching for is called Growth Versus Host Disease or GVHD. When the counts start to rise is when GVHD could start to show itself. As I explained in a previous entry, the GVHD could be very minor such as a skin rash all the way up to her body totally rejecting the new marrow. Hopefully we will not encounter any GVHD.

Michael is doing fine and we had an appointment at the clinic today for him. The doctors want to start getting a baseline on his counts, growth, and the disease progression in him. This is so when we have to return to the hospital for his bone marrow transplant they have his progress “charted”. Hopefully we will not be making this return trip anytime soon.

Well we went to the clinic and arrived early. After taking his vitals the nurse had us sitting in an exam room to await the doctor. After a half hour she told us that the doctor is busy with another patient and would be tied up a few minutes longer. Well the few minutes turned into quite a bit longer. I don’t know how many of you have had the pleasure of trying to occupy a healthy and very hungry 4 year old in an exam room. You can only wait so long before you realize getting something to eat out ways waiting for a doctor that is very busy. Plus the fact that since we are currently “living” at the same hospital the doctor can contact us when he is not so busy. So after waiting an hour and twenty minutes without seeing the doctor, Michael and I left to get lunch. We told the nurse that the doctor should call us when he has some time.
Sometimes it just isn’t worth stressing over the little things in life. (Plus we are not leaving the State for another 3 months so I’m sure we can squeeze in another appointment)

When we returned to Rachel’s room, Jackie was in the middle of a training session. A nurse was showing her how to change and clean Rachel’s central line. This is so when Rachel is discharged from the hospital we can maintain the line ourselves because it must remain connected to Rachel’s chest until approximately day 100. So we will be learning more this week about home health care for Rachel so she can be discharged from the hospital soon.



Take Care,


Mel

Sunday, May 20, 2001 at 11:04 AM (CDT)

Day plus 16 &17 (Updates for Saturday & Sunday 5/19-5/20/01)


Well the weather here has been absolutely fantastic, great, spectacular, outstanding, and wonderful at the same time. Can you believe that on Saturday it hit a high of 3300 and today it was 3900. It sure is hot. Oh wait a minute those were Rachel’s white cell counts, not the weather. The weather has been great but we are very excited about the counts. (To tell you the truth the weather doesn’t matter much because we are sitting in the hospital all day with other things on our minds)

Rachel’s white counts have continued to rise and the white cells ANC are right behind them. The ANC was 3200 yesterday and 3800 this morning. We are very excited about this and hope the trend continues. Rachel did require a transfusion of platelets yesterday so she was asleep for most of the morning and afternoon. Her red blood cell count dipped down a little yesterday but we learned that this is normal. In fact the red blood cells and the platelets are the last ones in the body to respond to the new marrow. It could be several months before the platelets show signs that they are responding. This will mean that Rachel will most likely continue to require transfusions when we are discharged from the hospital in a few weeks.

The transfusions will be given at the hospital’s clinic. Even after being discharged from the hospital we will still have to make daily visits to the clinic for follow up exams, blood counts, and transfusions. We also will be taking Rachel to meet with her tutor at the hospital. Rachel will be attending summer school so that she doesn’t fall behind in her education. If fact when we return to Connecticut in mid August, Rachel will not be able to start the 2nd grade in September. She will have to be tutored at home until her immune system grows stronger.

I should explain this a little further. When Rachel’s immune system was destroyed by the radiation and chemotherapy it also wiped out all of the immunization shots she has had since birth; polo, chicken pox, etc. After the new marrow was placed into her body she now has the immune system equal to that of an infant. Which means she has no immunizations against any diseases or illnesses. When her “new” immune system is strong enough she will receive the usual childhood shots but until that time she cannot be around anyone who is ill.

Otherwise, she is doing a little better. They have started to taper her off of the nutritional I.V. bags she has been receiving. So hopefully her appetite will start to increase. She actually had a small portion of pudding yesterday. I realize this isn’t world breaking news but it is the first thing she has physically eaten in almost 2 weeks. So we will start off with these “small steps”. Otherwise we can always resort to feeding her olives or something else.

Rachel also managed to do 7 laps around the nurse’s stations on Saturday. We are trying to increase her strength each day. It is also helpful for her mental spirit to get out of bed and walk around a little. Some of you have commented about the size of the I.V. pole in the photo album. There are a lot of I.V. bags, pumps, and fluids on the pole and some people, us included, were surprised at all of the equipment. In fact, there were more bags on the pole when she was undergoing the chemotherapy. While the pole is heavy Rachel has adapted to it. In fact if you look at the top right side of it and see some small colored objects, those are 3 heart shaped Powerpuff Girls key chains that beep when you press them. Rachel hung them on the pole to add some more color to it. It is fun to watch all the different reactions when a new nurse comes in and is following all the various I.V. lines to their meds and comes across the key chains. One of the nurses loves to make all the key chains start beeping at the same time the regular I.V. pumps is beeping. The key chains have a different tone and the other nurses try to figure it out which I.V. pump is beeping. It usually gets a laugh out of Rachel.

Mr. Mike and I are getting ready to go spend the day at the hospital with Rachel and Jackie but we thought we should pass along the good news before we left.



Mel

Friday, May 18, 2001 at 10:52 PM (CDT)

Day plus 15


Well the counts continued their rise today. Rachel’s white count hit the 1900 mark. Her ANC also rose to 1800. The ANC is the part of the white cells that fights off the infections. This is great news and we along with the doctors are very happy with the rising counts.

Since Rachel’s ANC has been over 500 for 3 days the doctors allowed her to leave her isolation room (but not the BMT Ward). She had to wear the usual mask to keep out airborne particles when she left the room. So after some coaxing on our part we convinced her she had to get the exercise. She donned her mask and Powerpuff Girls hat and was ready for the walk. She managed to walk around the “block” of the nurse’s station five times before getting tired and returning to her room. I was able to get a picture of her first walk and posted it in the photo album.

The rest of the day Rachel met with her tutor and also rested. Michael attempted to get her to play some Nintendo games with him but she wanted no part of it. She still doesn’t have a lot of her energy back but each day we hope she will get a little stronger.

On another matter, Jackie and I would like to thank everyone for all of the cards, gifts, and care packages you have been sending. It is very touching and it helps brighten each of our days. Michael’s favorite activity when we get home from the hospital is running to the mailbox to check for the mail and packages. The walls in Rachel’s hospital room are covered with all of the cards. Please understand that with everything that is going on we just have not had time to send out thank you cards but your generosity is greatly appreciated. Thank you.

I’ll update everyone on Saturday’s counts and thanks for signing the guest book. We read each entry to Rachel and they do make her smile knowing how many people are concerned about her.

Thanks for your support,


Mel

Friday, May 18, 2001 at 08:46 AM (CDT)

Day plus 14 (update for Thursday 5/17/01)


Actually have some great news to report for a change. Rachel’s white cell count went up from 600 to 1400 on Thursday!!! Her ANC level is also up to 1200. Her count is actually higher than Michael’s current one, as he just had his counts checked on Monday.

We hope the trend of rising counts continues. The white cells are already starting to reduce the size of the mouth sores that Rachel has. Hopefully soon they will all disappear and she can try to start eating again. The doctor told us that the patients usually lose their sense of smell and taste for up to a month. Soon after he left the room, Rachael asked Jackie is she had gotten garlic with her lunch? Jackie said yes and asked Rachel why she asked that. Rachel amazed us by telling us that she could smell the garlic in the room. I know it is not that big of an event but we took this as another sign that she is healing. So we are hopeful that her taste buds will return to normal soon.

Rachel was feeling better today and had a little more energy. She felt well enough (and was awake) to play the hospital’s TV Channel bingo game. Michael also took part in the game and actually won. Rachel wasn’t happy about this and soon went back to sleep. Michael waited patiently for the “bingo staff” to visit the room with their prize box. He was told to pick out any prize he wanted. Inside the prize box he saw a figurine from the children’s show Rugrats and said aloud that Rachel would like that. He then picked out the figurine and we placed on the table in front of Rachel so when she awoke she would see it. The woman was so touched by Michael’s gesture that she told him to pick out another prize but this one was to be for himself. He picked out a little periscope and had fun with it looking outside the hospital windows while crouched down behind a couch. When Rachel awoke she was happy that Michael had thought of her and she was pleased with his prize selection skills.

Thursday night the morphine doses that Rachel has been receiving are being reduced. This is done slowly so that she does not have a reaction from the sudden withdraw. This should start bringing back an increase in her energy levels.

So keep your prayers coming that the counts continue to rise and that it is the donor’s new marrow working and not Rachel’s old marrow.


We will keep you posted,

Mel

Wednesday, May 16, 2001 at 10:10 PM (CDT)

Day plus 13

A rather slow day today, so there isn’t a whole lot to write about. Which is a good thing.
The chest x-ray did not show anything in Rachel’s lungs. The C.A.T. Scan of her sinus area was also clear. We did not get any results back from the scan of her chest. The doctors did not seem overly concerned about it and sometimes no news is good news right?

Rachel was feeling a little better today and did not need the continuous flow oxygen as much. She also has not been using her morphine pump as much for the pain. The best news we received today was that her white cell count was up to 600. Hopefully they will continue to rise and rid her mouth of all the sores so she can start eating again.

It will be very nice to have the old Rachel back again. The one that talks non-stop and is always very active. But we can only take each day as it comes and not think about the future.

Everyone says take one day at a time. Recently we saw the movie 28 Days with Sandra Bullock. Someone said this same thing to her character in the movie and her great reply was “Like taking days 2 or 3 days at a time is an option?” Trust me after these past few days if we had the option we would still only take each day one at a time and certainly not two or three at a time.

Hang in there gang,


Mel

Tuesday, May 15, 2001 at 10:35 PM (CDT)

Day 12 (2nd update for Tuesday)


Rachel is doing a little better tonight. The chest x-ray showed that her lungs were clear. This afternoon she got to leave her room for the first time. But it was only for a C.A.T. Scan. She was required to wear a mask to guard against germs and got through the scans without any problems. We should hear the results of the scans tomorrow.

If you caught the update I did around 11:30 a.m. this morning I also added to it at 5:30 p.m. We have moved rooms at the hospital. This was due to another child on the floor needing additional medical equipment in his/her room. Their current room wasn’t large enough to fit the additional equipment so we had to move to a much smaller room so the other child could have our larger room. The room phone number has changed and I posted it at the bottom of the screen near our apartment information.

As of this evening, Rachel did not need the oxygen as badly and her breathing was a little better. She was finally able to start clearing some of the congestion from her throat. They also used a suction unit to physically help remove the congestion from her throat. This needs to be done so the congestion doesn’t go into her lungs and develop into something more serious such as pneumonia.

Well usually I try to lighten up the entries with a little humor or story but tonight just doesn’t seem proper. Jackie called and updated me on Rachel’s progress and told me that there was another emergency in another room. The doctors and nurses have a very difficult and demanding job. These last 24 hours have been extremely difficult for the staff and us but even more difficult for one family. So when you are saying your prayers for us please add an extra one for God’s newest angel.



Mel

Tuesday, May 15, 2001 at 11:34 AM (CDT)

Day Plus 12 (update since Monday night)


If you missed Monday nights update just click on the previous journal entries icon. I just wanted to update everyone on what happened after I posted Monday nights journal entry.

Around 11:30 p.m. there was a medical emergency in another room. I won’t go into details out of respect for the family, but it brought reality back for the rest of the families here on the floor. It also made it impossible to sleep worrying about Rachel and her breathing which was becoming more congested.

The third shift nurse, who is one of our favorites, decided to run a check on Rachel’s oxygen levels. It was a good thing she did. The test showed that Rachel’s oxygen levels were low. This meant that her lungs were not getting enough oxygen to the rest of her body due to the congestion. So this morning at 1:00 a.m. Rachel was given a breathing treatment. This is similar to a treatment given to asthma patients. The treatment seemed to help Rachel a little bit. She was then put on continuous flow oxygen to help her breathing. She was given a second breathing treatment at 4:00 a.m. and will continue to receive them. She was also hooked up to a monitor to watch her oxygen levels.Whenever the monitor dropped below a certain level an alarm would sound. A few second seconds later Rachel's breathing levels would increase and the alarm would shut off. This is normal for the levels to dip slightly when a person sleeps. Needless to say between Rachel’s coughing, rasping breathing, the I.V. and oxygen alarms and her frequent trips to the bathroom with her I.V. pole in tow, I didn’t sleep at all this morning until about 5:30 a.m., even then it wasn’t more then a quick nap. But it comes with the job and I wouldn’t trade places with anyone.

This morning she was given a chest x-ray to see if the congestion is developing into something. We have not received the results yet. Rachel is continuing to sleep with the oxygen tube on and it seems to have helped her. We also were told that her white counts levels dropped from 300 down to 200.

We will keep you posted- it is going to be long day.



Mel

5:25 p.m. - Rachel is doing a little better. We have been moved to another room. The new room # is (612)273-0230.

Monday, May 14, 2001 at 07:39 PM (CDT)

Day plus 11


The day started off with no fever or high temperatures. We also got some good news on Rachel’s counts. Her white count was up to 0.3 We realize that is only 300 and is a long way from the minimum standard of 4,000 but it’s a start. The white cells should start working on the mouth sores and will help heal them faster.

I should relay this news with some caution. First off the counts can vary each day so what could be a rising number today could easily decrease tomorrow. The second thing to keep in mind is we don’t know if these are her white cells rising or the donor’s white cells. If they are her’s than it means that her immune system wasn’t totally surpressed by the radiation and chemotherapy. That could cause some complications to say the least. If the white cells belong to the donor then that is GREAT news and means the transplant worked and her body is accepting the donor’s marrow.It could also mean that her body is not rejecting the new marrow.

So the question you are all asking yourselves is WHEN do we find out whose white cells are they? Well we only have to wait about another 17 or so days to find the answer. I know, 17 days seems like a lifetime doesn’t it? (no pun intended) Hopefully in the meantime the white cells continue to rise and the mouth sores decrease.

Jackie received a phone call today from Peggy, a friend of ours who has a son named Chris who went through the same process with his BMT for Fanconi Anemia. She assured us that Rachel is on the same track as Chris was. He also suffered from the extreme mouth sores, irritability, and was very sensitive to light and sound. Peggy told us that after about 2 weeks things began to improve. Chris does not really remember the 2 weeks but I’m sure it is something Peggy along with us and all the other parents will never forget. Peggy- thanks for the call and telling us that we are “on track” with everything.

Rachel continued sleeping the entire day. Hopefully she will sleep the entire night or a good part of it, because I’m pulling the night shift tonight. Jackie went back to the apartment with Michael tonight. Not to “web bash” Jackie, but I told her part of the apartment “duties” was to update the web site. She wanted no part of it. She says she likes the way I write the journal entries. Being married as long as we have I knew right away she was full of it. She had plans to go back to the apartment and drink wine while taking a long bubble bath. Updating the web page would take away from her relaxing time. Actually I can’t blame her for wanting to relax a little. Being cooped up in the hospital for days at a time gets very tiring and frustrating. She deserves to relax.

Speaking of relaxing I’m going to try and get some reading in while Rachel is napping. She doesn’t sleep soundly because of the morphine and congestion in her throat but if it helps her feel better, than so be it.


Hanging in there (and not taking a bubble bath tonight),


Mel

Sunday, May 13, 2001 at 09:39 PM (CDT)

Day plus 10 - Happy Mother’s Day


Rachel’s fever broke last night so we were very happy with this. This afternoon her temperature spiked again slightly, but this evening it was back to normal. Her mouth sores are extremely bad and the morphine doses were increased. Instead of having to give her morphine booster shots every two hours they have set up a morphine “pump”. This will allow Rachel to squeeze a plunger on her I.V. pole to get the morphine doses when she is feeling the pain in her mouth and throat. It is all very controlled and she cannot over medicate herself.

She was very congested today but the staff felt it was more throat congestion then congestion in her lungs. Her throat is very tender and she is not able to clear her throat to remove the congestion. Actually it is very hard for her to speak and she slept almost the entire day. She did need the sleep because she hasn’t slept for more than a few hours at a time. She doesn’t sleep soundly at night and is up every hour using the bathroom.

If the fever and infection does not completely respond to the antibiotics then Rachel will undergo a C.A.T. scan early this week. We are hoping that everything starts to clear up this week and her counts start to respond (even slightly) to the bone marrow transplant.

Not much else to say. If you missed the part about the donor’s gifts and letter just click on the past journal entries icon.


Take Care,

Mel

Saturday, May 12, 2001 at 11:02 AM (CDT)

Day plus 8 & 9


I spent the night at the hospital with Rachel and knew that Jackie was very correct in her observation that a person does not get much rest there. Due to all of the fluids going into Rachel’s I.V., she has to go to the bathroom about every 40-60 minutes. This plus the fact that she sleeps most of the day means she is usually awake at night. The night staff is very good and tries to be as quiet as possible but you still know that someone is walking around a dimly lit room a few feet from where you are trying to sleep. The night staff also tries to change the I.V. bags before they run out of fluid and sound an alarm on the I.V. pole. This doesn’t always happen in time and the alarms take some getting use to. Yes, we have learned how to shut the alarms off but they only stay muted for 2 minutes before sounding again. This is a built fail-safe device probably built by someone who never had to try sleeping next to one of the things. We are adapting to the whole system.

Rachel’s condition has not changed much. She received another transfusion of platelets at 3:00 a.m. and her blood work was taken at 4:00 a.m. A few hours later the results of the blood work showed there has not been any change in her white blood count (WBC). The “normal” range is suppose to be between 4.0 - 15.0 Rachel’s current WBC is less then 0.1 As you known, the white cells are the infection fighting cells in our bodies. Since Rachel has no white blood cells her body cannot fight off infections. This is why she is having a difficult time fighting off the blood infection that she currently has even with the antibiotics she is taking. Her fever also came back Friday afternoon and hit 101.6, but later in the evening it had diminished somewhat.

She is continuing to lose her hair and looks nothing like she did in the photos from last Saturday at Michael’s birthday party. It is very hard to see all the changes in her in less then one week’s time. I know some of you wanted to see some pictures of her with her new hats. I will post some photos for everyone, but when Rachel is ready and feeling a little better.

On a happier note we did receive a very surprising package Friday afternoon. The package was from Rachel’s bone marrow donor. It was a pink bag that contained 2 Beanie babies and a pewter pin in the shape of an angel. The first Beanie baby was a white bear with Angel wings and a halo. It is appropriately named “Halo II” the second Beanie baby, named Grace, and is a small rabbit in a kneeling and praying position. We attached the angle pin to Hope II and posted a picture of these very special gifts in the photo album of this web page.

There was a card that was with the gifts. It was very touching and normally I wouldn’t post these types of things on the web page but considering who the card was from and considering what the donor had done for us, I think he deserves a little special recognition.

The card said:
“To our new friend-
Here are a couple of items to keep you company while you’re getting better. We, along with our three children will be praying for you every day and will look forward to learning about your progress.
We hope you enjoy the little bear and rabbit and remember the angle is a symbol of God’s grace. He’ll be watching out for you and your family during this time of healing. I am sure you are anxious to be better and outside for the summer.
You have a lot of wonderful doctors and nurses taking care of you and lots and lots of prayers for you and your family.
We hope we’ll be meeting you as soon as we’re allowed to.
God Bless You!
Your donor and family.”


These gifts were very special to Rachel and us. They now have a special place on her nightstand watching over her as she heals. The rules for the donor program do not allow us to know the donor’s name or where in the world he is from. All we know about the donor is that he is 39 years old. As I understand it, he will get occasional updates on Rachel’s progress but nothing further. After one year if the donor and Rachel both agree then they will be allowed to meet. We have already discussed this with Rachel and we cannot wait to meet this very special person.

So go look in the photo album and see the special gifts that came from an “Angel” and reflect that the world is just a little brighter because of people like him.



Take care,

Mel

Thursday, May 10, 2001 at 09:58 PM (CDT)

Day plus 7


Rachel is still running a fever and has all day. It started at the usual 101.4 and now it is down to 99.4 so not much has changed in that area. They are continuing to give her medications to combat this. The mouth sores have increased and so has the pain with them. To give you a rough idea the size of these sores, they are about the size and color of baby teeth. They cover the tongue and the sides of a person’s mouth. It is difficult and painful to even try to swallow liquids. They have increased Rachel’s doses of morphine to try and ease the pain associated with the sores.

Well the loss of hair has started. She began losing her hair last night and today it continued falling out. It does not fall
out all at once. It comes out strand by strand and in small clumps of strands. So there are strands of hair everywhere on her bed and the floor. She is now putting all of those hats everyone gave her to good use.She has resorted to pulling the remain hair out and it comes out quite easily. Tonight she was making a little game of it. When I would get up to answer the phone in the room and had my back turned, she would pull a clump out and put it on my chair. I
would come back to the chair and there was a clump of hair waiting for me. So I would scoop it up and throw it away. A few minutes later she did the same thing again when I answered another call. This time I caught her and she just laughed it off.

During the day she is feeling very tired and sleeps most of the day away. Around 7:00 p.m. or so she gets a little energy. So tonight her and I got to watch the Disney movie “The Emperor’s New Groove” with David Spade and John Goodman. It is a pretty funny Disney movie with the usual one liners in the movie for the adults. So of course Rachel got all of the one-liners and I didn’t have a clue. We also had some time to color and play a little Nintendo
before she got tired and wanted to go back to sleep. It was a nice change being at the hospital at night and seeing her out of bed and a little more active then when Michael and I are here during the day.

Jackie went back to the apartment with Michael tonight. It was her first time out of the hospital in two weeks. So the first place they stopped was at Friday’s Restaurant for dinner. I can’t image why someone would want to go to a restaurant after eating hospital food for 2 weeks. So after they left the restaurant and Michael showed Jackie the way back to the apartment, they also had a chance to relax and spend some time together.

Well I’m going to try getting some sleep now. From what Jackie has told me you sleep in short naps here at the hospital. The staff is always coming into the room and checking vitals (Rachel’s - not ours) and adding new medications. Also due to all the fluids being pumped into her central line, Rachel has to go to the bathroom every few
hours. So it will be a long night.

Take care.


Mel

P.S. Im sorry if the format above did not come out right.I'm typing this on the hospital's computer and it uses a different format.

Wednesday, May 09, 2001 at 11:01 PM (CDT)

Day plus 6


Not much has changed for Rachel. This morning she was running a fever of 101.4 The doctors also found that she has a bacterial type infection. They believe the mouth sores or just normal skin bacteria could possibly cause it. They have started her on the usual antibiotics and will continue to monitor the infection.

The radiation mouth sores have gotten worse and her morphine doses have been increased to help her with the pain. She slept most of the day and afternoon. When she was awake she was crying because of the pain in her mouth and throat. She could barely speak without it causing her discomfort. As everyone who knows Rachel, she is a little chatterbox, so it is very stressful on us to see her in this type of condition. When she is awake she doesn’t wish to speak to anyone or do anything and usually falls back to sleep within a few minutes.

The bleeding in her central line seems to have stopped. As I mentioned yesterday she had received a platelet transfusion to help boost her platelets in hopes it would stop the bleeding. This appears to have worked and she also had to have another platelet transfusion tonight.

Tomorrow night Jackie and I are going to switch places to give each other a break. Jackie has been at the hospital since Rachel was admitted. I have been making the daily commute with Michael and holding things down on the apartment end. I will stay overnight at the hospital with Rachel and Jackie will come back to the apartment with Michael. It is a “change of pace” that we both need and the kids can use the change also. I did tell Jackie that part of her nightly duties was that she had to update the web site. She disagreed on that and wants me to continue the writing. (I think she just wants to play Nintendo tomorrow night with Michael instead of writing to all of you)

Today also marks the one-month date since we had left to come to Minnesota. I don’t know about you, but it feels like we have been out here for 6 months.

Take Care and hopefully we will have some better news soon,


Mel

Tuesday, May 08, 2001 at 09:19 PM (CDT)

Day Plus 5


Today wasn’t a good day for little Ms. Rachel. Overnight she developed a low-grade fever of 100.5 and it remained around there until later in the afternoon. Blood cultures were done to see if she is developing an infection. Her counts dropped low so she needed a red blood and platelet transfusion. The mouth sores from the radiation have gotten worse so her morphine dosage was upped to help her with the pain.

There was also a problem with her central line that goes directly into her chest. It was filled with blood and a small amount of blood was also on her chest near the stitches. The staff felt she was bleeding due to her low platelet count. They started the platelet transfusion and put some powder on the area to help her blood start clotting. As you know, with low platelets your blood won’t clot, so this was a major concern. About an hour and half later Jackie checked the area again and found more blood. So the line had to be flushed again and re-cleaned. This also brings about the very significant risk of infections so we have a few things to worry about today and tonight.

They are fairly certain with the platelet transfusion this will help her blood start clotting and the area to stop seeping of blood. Her blood pressure also remained a little high again today so she was given more medications to bring that under control.

Rachel did not feel like getting out of bed today and slept most of the morning and early afternoon away. She did receive a surprise visit from Snoopy today and that was about the only time she sat up in bed. It was kind of unique how the staff took the picture of Snoopy with the kids. Since all of the children on the ward are in isolation rooms and Snoopy’s costume has fur on it, he cannot come directly into the rooms. So Snoopy is positioned outside the door and the children sit up in their beds. The staff gives a signal and the room door is opened for about 2 seconds while the picture is taken. The door is the shut and the kids are handed a Polaroid photo of themselves with Snoopy in the foreground. I took a picture of the Polaroid photo and posted it in the photo album. The quality is not the best but if you look in the background you can see Michael and Rachel sitting on Rachel’s bed looking at Snoopy. The photo made Mikey’s day but Rachel could have cared less and just wanted to go back to sleep, which she promptly did.

By the way I don’t know how many people noticed but today the web site counter logged 10,000 visits to this site since January! That is great! So whoever was the 10,000th person was please contact us for your weekend getaway package to downtown scenic Minneapolis. (What did you expect- Hawaii?? :>)


Write to you soon,

Mel

Monday, May 07, 2001 at 09:16 PM (CDT)

Day plus 4

The last two days have been a big change since Saturday. Rachel is sleeping a lot more and the mouth sores have gotten worse. She doesn’t usually complain but she has told us they are bothering her. The doctors have started her on small doses of morphine to help the pain. Today she was running a slight temperature and her blood pressure was a little higher then usual. They have also started her on blood pressure medication to keep it in check. The high blood pressure is a common side effect from some of the medications.

She also has very little to no appetite. She has also been started on I.V. bags filled with nutrients so she doesn’t lose more weight. This might also be adding to her decreased appetite.

Sue left for Connecticut this afternoon and we already miss her. She was a great help and a person couldn’t ask for a better sister. We can’t wait until she returns again in June. Hopefully Rachel will be out of the hospital by then and we can do even more activities with Sue.

I also need to address another matter. Some of you might have seen the front page of the local Rockville Reminder paper with Rachel’s photo on it. The caption also mentions my name and occupation. This photo and caption was done without our knowledge. We know that this was done with the best of intentions for Rachel but we would like to remind everyone that we don’t want any media attention on our children. It is hard enough for them to lead normal lives and being a police officers children will make it even harder on them much less having genetic diseases. Please do not make our children’s information or photos public information. It is one of the last things we can do to “protect” our children. Please help us in this matter.



Mel

Saturday, May 05, 2001 at 11:58 PM (CDT)

Happy Cinco de Mayo


How is everyone today? Things are going good on this end. The day started off with Sue making and decorating Michael’s birthday cake. Now this may not seem like a big deal but it took over 4 hours to complete the cake. About 8 months ago, Michael saw a Batman and Beyond (the new Batman version compared to the one we grew up with as kids) cake pan in the grocery store. He said he wanted that for his birthday and he wanted his “Aunty Suey” to make the cake for him. Sue has a special “gift” for making beautiful cakes but she will only do it for Rachel and Michael. Sue promised Michael 8 months ago that she would make him his birthday cake.

Here it is 8 months later and Sue, who is the type of person who keeps her promises, flew 1,300 miles to make Michael his Batman cake. It took her all morning but she completed it and it came out great. (I included a photo of it in the album.) Michael was thrilled because he also assisted in decorating the cake and licking the left over batter on the mixing beaters.

Michael was also very excited because he had received e-mail from Batman telling him that Batman was going to call him at the hospital at 2:00 p.m. So we arrived at the hospital just in time. Exactly at 2:00 o’clock, Michael answered the ringing phone in Rachel’s room. The look on his face when he was speaking with his favorite Superhero was priceless. Batman then also spoke with Rachel who was equally excited. It made their day and we would like to thank “Batman” and his assistant for coming up with the idea and making the call. You made their day.

Michael with Rachel’s “big sister help” then tore into his presents. He loved everything he got and the spent the afternoon playing with all of his presents. He and Rachel had a great time showing the nurses the toys and sharing the Batman cake. One of the nurses even came into the room for cake and a little socialization. He wasn’t our assigned nurse tonight and he told us how disappointed he was. He was telling us that he loves having Rachel as a patient because she is so easy going.

Rachel was in great spirits and was in such a hyper mood I jokingly threatened to put some Benadryl in her I.V. to make her go to sleep. She was so happy to be playing with Michael, Jackie, Sue and I that she was beaming. She is becoming so comfortable being attached to her large I.V. pole that she even made a halfhearted attempt to try to “skateboard” across the room on the bottom of the I.V. pole. We quickly discouraged her from this because we did not need her ripping the central line attached to the I.V. pole out of her chest. She just laughed it off and went back to being a typical 7-year-old girl.

Sue decided to spend the night at the hospital with Jackie and Rachel to have a “girls night sleepover.” They ordered Chinese take out food and probably spent the night ringing the call button for the male nurses to respond to the room.

Michael and I left for the apartment before things got out of hand. He was happy to be playing with his new toys. He went off to bed knowing that we get to go back to the hospital and do it all over again tomorrow. He loves spending time with Rachel and the two of them are so close. We can’t image making this trip without him.

Rachel is doing fine and it seemed she had the best day since she has been admitted. Jackie had a good suggestion for the web page and I’m going to incorporate it at the beginning of each web page. I’ll give you a little bit of background on her idea.

When a person receives a bone marrow transplant (BMT) the days before the transplant are referred to as negative days. The transplant day is called day zero and every day after the transplant is referred to as a plus day. This is so the doctors and everyone else can track when a person or procedure might encounter problems regardless of what the actually date of transplant was. You will often hear people refer to day 5 or day 50. The magic day for us is day 100. That is when they will consider letting Rachel go back home to Connecticut. For those of you about to do the math, let me save you the trouble. One hundred days from May 3rd is August 11th trust me we did the math – several times.

So on the top of the web page entries I will refer to each day as a plus day. So we have a new goal simply termed………… each day.



Mel

Friday, May 04, 2001 at 10:45 PM (CDT)

It has been a very long 24 hours so that why this update is a little late. It was one of the most important dates but also one that was filled with a lot of running around and sitting around.

Thursday morning Rachel met with her tutor again and completed her assignments. Later she played a game of interactive bingo. The hospital has a channel on each patient’s television that they broadcast movies, hospital news, etc. Once a week they hold a game of bingo. The patients are given bingo cards and the host of the “show” displays pictures of different things. The kids playing the game from their rooms then have to X the matching photos on their bingo cards. If they complete a line on the card they have to call in on a phone number to the hospital’s show to claim they won. Well it was Rachel’s first time playing bingo this way and she won a stationary set. She was very pleased and it was a unique way for a bunch of people in isolation rooms to “play” a game together.

Sue, Michael and I did a bunch of errands before coming to the hospital that afternoon. We knew it would a late night so we tried to get everything done before we came to the hospital. We picked up Rachel’s birthday cookie. As some of you know her officially birthday is in March. But on the day of your transplant they call it your 2nd birthday because you are given the gift of life all over again. Rachel did not want a traditional birthday cake and wanted a large cookie type platter. So we ordered a large chocolate chip cookie platter that was the size of a large serving plate. It read “Happy 2nd Birthday Rachel” on it. The hospital doesn’t not allow lit candles in the rooms, so the “cake” was without candles but no one cared.

Around 4:30 p.m. a Chaplin came to Rachel’s room and we all participated in a prayer service and blessing for Rachel. We also said a blessing for the donor of Rachel’s new marrow.

The rest of the evening we spent sitting around and awaiting the arrival of Rachel’s new marrow. It also gave us time to reflect on everything that has occurred up to this point in Rachel’s life and the journey we have gone through to this point. From the original diagnosis on 11/11/99, the hundreds of trips to the Children’s Hospital in Hartford for various appointments (and a few hospitalizations), all of the fundraisers, to the trips we made to Boston, New York and Minneapolis to meet with various doctors. Everything we had done to this point had boiled down to this one night. I have a better understanding of what an Olympic Athlete must feel like. They plan and train for an event for years. The “event” and all of the planning, training, and dedication that must be done can consume their lives if they let it. But regardless of all they have done there is still no guarantee that they will succeed.


Rachel and Michael were a great distraction for the long hours of waiting for the marrow to arrive. Whoever said, “Ignorance is bliss,” said it all. These two kids were happy to be staying up late and took full advantage of it. They didn’t care why they were allowed to stay up past their normal bedtime. (If there is such a thing as “normal” anymore) Michael and Rachel had a great time playing games and reading books.

The nurses explained that the transplant would be arriving from the airport around 4:00 p.m. and then the marrow is sent to the hospital’s laboratory. There the T-cells are examined and some of them are removed. This is done to try and lower the risk of Rachel’s body rejecting the new marrow. The transplant was scheduled to occur at 10:30 p.m.

Around 9:30 p.m. Rachel started becoming very tired and got sick at one point. But 10 minutes later she was feeling better and was reading more stories to Michael. The nurses gave her some anti-nausea medication and this made her very tired. Well 10:30 came and went so did 11:30 with no word on the marrow or if the lab was close to completing the T-cell examination and extraction. Michael was wide-awake and was disappointed that Rachel was sleeping but he made the time go by trying to entertain all of us with his various antics and dancing. It was hard to believe that he was only turning four in a few days. It seemed as though he had aged and matured to about the age of 10 in the last month.

At 12:30 a.m. the TRANSPLANT marrow had arrived. It was now May 4th and Rachel was sleeping and was also medicated with Benadryl to combat any reaction she might encounter. The nurses hung up the I.V. bag of marrow on the I.V. pole. The bag was only about 6” long by 4” wide and only contained 95cc of a yellowish fluid. It was not what we had expected. In one way it was anticlimactic because it was just another I.V. bag hanging next to 5 other I.V. bags. Though on the other end of the spectrum this one I.V. bag contained her “new life” and the “life” of a person who was willing to share his “life” with a little girl he has never met before.

The entire process took approximately 20 minutes. The nurses explained that Rachel would have to receive a second transplant bag today. This second bag is added T-Cells. The procedure for transplant calls for the lab to do a T-Cell count of the donor’s marrow. They then try to match it up with the number of T-cells that Rachel’s body requires. Too many T-cells and body could reject the new marrow; too few T-cells could cause further complications with the transplant.

During the transplant the nurse constantly monitored Rachel’s vital signs. Her blood pressure was high for a while but stabilized and her skin had a small amount of hives. These are all normal reactions and were quickly brought under control. She continued sleeping and did not have any more reactions throughout the night.

This afternoon she received the second transplant of the added T-cells. It was the same procedure as the first transplant and was completed in 10 minutes. She didn’t have any reaction. Rachel’s immune system is still suppressed and will continue dropping for the next few days. Her white cells will continue depleting. This is when there is a very HIGH level of concern of infections. The doctors have noticed she has a small amount of mouth sores. This is common because of the depleting white cells and the normal bacteria inside of everyone’s mouths. It will also be common for her to get a fever in the next few weeks.

Just to clarify a few points. The new marrow does not immediately take over for Rachel’s old immune system. In fact we won’t know if the transplant even worked for several weeks. There is the risk of infection as I mentioned and the risk that the new marrow won’t engraft with the old marrow. All we can do is wait.

Tomorrow we will be celebrating Michael’s 4th birthday so we have to get back to the apartment to wrap up his presents. Sue is making one of her specialty cakes for Michael. We are trying to make his birthday special and so he doesn’t miss out on anything. One of the main things I have learned about bone marrow transplants is that the patient is not the only person undergoing the transplant. We ALL go through it together.



Mel

Friday, May 04, 2001 at 12:11 PM (CDT)

I have just added some new photos to the photo album. I have not had time to update the journal entries because I have to get to the hospital for the 2nd part of the transplant. I will update the journal entry later this afternoon. Thought everyone would enjoy the photos though.

Hang in there, it just kinda of a stressful day with a lot to do. We are also trying to get ready for Mikey's 4th birthday tomorrow.

Mel

Wednesday, May 02, 2001 at 11:45 PM (CDT)

The day started off with the arrival of “Auntie Suey” at the airport. Sue, as she is known to us mere mortals, arrived around 10:00 a.m. Michael and I picked her up at the airport and drove straight to the hospital. Rachel was very happy to see us to say the least. Rachel spent the morning with her tutor, doing her homework, and getting another platelet transfusion before we arrived. She then had time to visit with us before she was medicated with the Benadryl. She then took her afternoon nap.

Michael spent this time showing off his Nintendo skills to his Aunt while Mom read a book and Dad took a power nap. The doctor checked Rachel over and she is pleased with the progress so far. She explained that some children with F.A. have a very difficult time with the treatments and have a lot of complications. Other children have no problems and very minor side effects. It was also pointed out that Rachel and Michael could react totally different when he has to undergo treatment. One hurdle at a time right now.

When Rachel woke up and when the effects of the Benadryl wore off she was back to her old self. She was playing Nintendo and beating Michael (and the rest of us) at her favorite racing games. She then began painting the rest of the room’s windows with Sue. I included a picture of their handiwork in the photo album. It really does brighten up the room. Of course Michael had to put on his surgical gloves (oops, I meant painting gloves) and help paint the windows also.

Rachel is feeling fine and we are awaiting the big day tomorrow. Actually it will be tomorrow night. We have found out that the donor’s bone marrow is arriving at the airport at 4:00 p.m. and then it will be brought to the hospital’s lab. There it will undergo some further processing and will be ready around 10:30 –11:00 p.m. (Central time). So Rachel’s transplant won’t take place until tomorrow night.

To briefly explain the transplant process: The person who donated the marrow underwent an operation today or will undergo the operation tomorrow morning. All we know about the donor is that he is 39 years old. We don’t know where in the world he is but our heartfelt thanks and prayers are with him. He will undergo a very short procedure where a small piece or plug of his bone marrow from the hip area is removed. His body will replace the “lost” marrow in a few weeks. The removed marrow will then be placed into an I.V. bag. After shipping and undergoing further processing at the hospital it will be given to Rachel.

All that is involved on Rachel’s part is to have the transplant I.V. bag hung on her I.V. pole. We have been told the transplant / infusion takes approximately 1 hour. The marrow inside the intravenous tube will enter Rachel’s body and will “automatically” know where to go in her body. The marrow will go to the bones and attempt to fill the “void” left behind by her marrow that was wiped out by the chemotherapy and radiation. This is the basic process. It could be up to several weeks before her body shows signs that the transplant worked or not.

We would like to thank everyone for all of his or her support throughout this ordeal. It has been a very, very long road. We could not have made it this far without all of you. We also know we have an even longer journey ahead of us.

Everyone always asks us if there is anything they can do for us to please let them know. Well we have a few suggestions. They take a few minutes of your time but you could save someone’s life. A very strong example is our unknown donor. He took the time to become registered on the National Marrow Donor Program and now he is trying to save the life of a 7-year-old girl he has never met. What can be more precious then the gift of life? So here are my suggestions on how you can help:

First, some of you in Connecticut might have read the story in tonight’s Journal Inquirer about the Tate family and how they are having a blood drive this weekend. The Tate’s are friends of ours and their daughter Amanda has leukemia. She is a big inspiration to Rachel and we have written about her before. (You can also see her web page and photos by clicking on the link near the bottom of this web page.) The blood drive is to help the Red Cross with their blood supply. Rachel and Amanda and thousands of other people rely on the Red Cross everyday for blood.
The blood drive is being held this Sunday May 6, 2001 between 8:30 a.m. and 1:15 p.m. at the Connecticut State Police Barracks at Troop C in Tolland. Please show your support and attend the drive. It only takes a few minutes and all types of blood are needed.

The second way everyone can help is to become registered on the National Marrow Donor Program. Click on the link at the bottom of this web page for further information on the program. You can really make a difference in this program. I would like to share with you how lucky we are with Rachel. There are only approximately 4 million people registered in the N.M.D.P. Sounds like a lot right? Not when you consider how many billion people are in the world. When they did the search looking for a match for Rachel’s bone marrow they found 123 possible matches. That is an extremely high number, but remember that was out of 4 million people. So if you need a bone marrow transplant or someone you love needs a BMT, chances are likely there might not be an exact match in the registry.

We know of several families that are searching for matches for their children because no one currently registered matches their children’s bone marrow. To get a more detailed story please visit the web site of a family that has 2 children with Fanconi Anemia and are searching desperately for a donor. Their web site is caringbridge.com/mo/b_positive


Please take a few minutes and register for the NMDP. It involves taking a few tablespoons of your blood. Contact your local Red Cross and ask them when they are having a bone marrow registry drive. The few minutes it takes you to register could make the difference between life and death for someone. I know it did for someone you already know and love – Rachel.

God Bless You All,

Mel

Tuesday, May 01, 2001 at 06:54 PM (CDT)

Not much new since yesterday. Rachel had a good day today and it was her last day of chemotherapy. So far no effects from the chemo. But the nurses have told us the hair loss might not start until after the transplant or a few days later. Another side effect of the chemo is mouth sores. This doesn’t help the patients, with their decreased appetites, want to put anything food in their mouths. The remedy to try and prevent the mouth sores is to brush Rachel’s mouth 4 times a day with a salt-water solution. This is not her favorite activity of the day and she has grown to hate it. The doctors are going to order another type of mouth wash solution to try on her. They will also be starting her on an I.V. feeding tube to get her more nutrition and prevent weight loss.

Rachel was awake the first half of the day and was like her old self compared to yesterday. She met with her tutor and did very well on her homework. She then spent the rest of the morning and early afternoon playing Nintendo with Michael. After her chemo treatments she was given some Benadryl so it was naptime. The doses they give her are equal to one sleeping pill so she goes right to sleep for a few hours. (Hhhmmm I wonder if I can slip a few of those to Michael when I’m trying to get him ready for bed and he wants stay up for few more hours)

After the Benadryl wore off, Rachel was ready to get up and start playing again. She is feeling good and the doctors are pleased with her progress so far. Still no word on what time the transplant is going to take place on Thursday. We might find out more tomorrow.

The news is coming on warning about possible tornados in the area. The day was very sunny and in the high 70’s. I even slipped in a nice walk around part of the Mississippi River that borders the hospital grounds. Within the last half hour the sun was gone and the clouds had become very, very dark. A few minutes later the staff came around and told everyone to close their window blinds and stay away from the windows because of possible tornados.

So after complying with the staff’s requests, I remembered that Michael and I had parked the car on the top floor (roof) of the parking garage when we came in this morning. I was worried that the heavy rains and hail would damage the car, or worst we go out there and our car would be on its way to Kansas with Dorothy. So I did a quick dash for the parking garage a few blocks away. It was strange going outside the hospital and hearing the city’s air sirens sounding. Since we don’t use them anymore in Connecticut I thought of the old Godzilla movies where Godzilla was attacking the city.

Well I got the car off the parking garage roof and safely to “shelter” a few stories down. It was just in time because 5 minutes later the rain got a lot heavier and the hail started. The hail was the size of golf balls. The storm stopped about 15 minutes later and no tornados or Godzillas went through the city. (That would have been a good picture for the photo album huh?) Ten minutes later the sun was back out. We use to think the weather in CT was crazy!!

Well Michael and I are getting ready to leave the hospital and start our trek back to the apartment. Hopefully it is still there because the storm was heading in that direction.


Mel

Monday, April 30, 2001 at 05:12 PM (CDT)

Rachel was pretty beat today. She has been medicated with Benadryl all day to fight off any reactions to the transfusions she needed. She only got out of bed for half an hour to meet with her tutor and do her schoolwork. She then went right back to bed and wants to stay there. She had another two bags of chemotherapy today. Due the chemo knocking her blood counts down she needed more platelet and red blood transfusions. To fight off the usual reaction she was medicated with the benadryl, which makes her very tired.

They are also guarding against her having another reaction from the anti-rejection medication she is on. Saturday she broke out in hives from the medication but this a common reaction to the medications according to the staff. The benadryl helps fight off any reaction. She is hooked up to a total of 7 different I.V.s so when she has to go to the bathroom, which is about every half hour, it becomes a little tricky but we manage.

She is starting to lose her appetite but the doctors have said this is normal. They were actually surprised that she has eaten as much as she did when she was first admitted. Most of the children lose their appetites long before this.

Speaking of other children we have not met any of the other 11 children on the ward. There is a chart near the nurse’s station that shows the children’s names and the towns they are from. There are children from California, Missouri, New Jersey, North Dakota, Maryland, two from Minnesota, Puerto Rico, and a few other places that I can’t recall right now. There are no other children here that have Fanconi Anemia.

The reason we haven’t met the other parents is because the rooms are all isolation rooms for obvious reasons. All of the rooms have large wooden doors that have to remain closed. So unless you happen to exit the rooms at the same times you don’t know who the people are “living” next door. Most of the parents (us included) stay in their child’s room the entire time unless you are going to the cafeteria or restroom. We are not allowed to use the restroom inside Rachel’s room for sterility purposes.

Michael is quite the character lately and is always doing things to make us laugh. He has been a big help around the apartment with the housework and chores. He is excited about “Aunty Suey” coming out to stay with us for a few days and to make his special Batman birthday cake. He is adjusting to Rachel staying in the hospital and has no problem visiting with her all day.

We asked the doctors if they know what time the transplant will take place on Thursday and they didn’t know yet. It will depend on where in the world the marrow is coming from. It will also depend on the weather (for example flying or transporting it overseas, etc.- IF that applies). The marrow also has to undergo a lengthy filtering process in the labs once it arrives at the hospital. The transplant might not occur until very late Thursday night, there are just to many unknown variables right now.

Well gang got to run up to the café and see what’s on the menu for tonight. I’m sure it will probably be prime rib or lobster again –not.

Mel

Sunday, April 29, 2001 at 05:00 PM (CDT)

Not much to report for Sunday. Rachel had her two bags (I.V.s) of chemotherapy today without any problems. She is hooked up to a large I.V. pole that has 4 different fluid bags of medication on it along with 3 different I.V. pumps. With all the I.V.s and the plastic lines coming off of them it looks like a tangled mess of plastic spaghetti. We have to make sure she goes to the bathroom at least every two hours. So we have to unplug the I.V. from the wall and pick up all the “spaghetti” attached to Rachel and the pole and then wheel the pole closely behind Rachel to the bathroom. This process has to be done even in the middle of the night, every two hours. So needless to say one doesn’t get a restful nights sleep here.

Some of you have asked if Rachel will have to undergo the total body irradiation again? No, the current protocol calls for only one dose of radiation and then 4 days of chemotherapy. From what we have been told the chemo effects won’t start showing up for a while and can get a lot worse in the next few weeks.

We met with more of the doctors yesterday and they are happy with Rachel’s progress. One of the doctors impressed us by doing something that is not related to the medical field at all. Last week she ran and finished the Boston Marathon. When we starting comparing finishing times for marathons she really surprised us and told us that she had finished the run even though she thought she had a stress fracture in her foot. She even shared with us some good running routes around the area of the hospital. We will have to try those routes soon just to burn off some stress.

Another question someone asked was the size of the hospital. I know the picture on the web site makes the hospital appear to be small. Trust me this place is huge and covers several city blocks and both sides of the Mississippi River. I read something recently that the University of Minnesota is actually the largest campus in the United States. (A little bit of useless trivia for you.)

The rest of the week will be busy. Rachel has to undergo more chemotherapy on Monday and Tuesday. My sister, Sue is flying in on Wednesday to be here for the transplant and Michael’s upcoming birthday next Saturday.

We are enjoying the quiet time this weekend. Rachel loved all the cards from her Sunday school class and from all her fellow first graders from Mrs. Moser’s class. All the cards are now proudly hanging up on the walls in her room. Some of the room’s windows have also been painted and yes, Michael and I painted the “Bat Signal” on his part of the window. He is very proud of it.


Take Care,


Mel

Saturday, April 28, 2001 at 03:40 PM (CDT)

Friday was a very difficult day. Rachel was to begin the total body irradiation at 7: 30 a.m. but the procedure was re-scheduled for 2:00 p.m. So that gave us the morning and early afternoon to relax and paint the windows in her room. She and Michael had a great time playing together, painting, and decorating her room. I have posted some photos of the room in the photo album.

Before undergoing the radiation treatment Rachel met with her new tutor, Beth, and worked on her schoolwork. So there is no escaping the homework assignments even when you’re in the hospital.

At 2:00 p.m. Rachel underwent the radiation treatment. The reason for this procedure is to destroy all of the marrow in her body. Her entire body and head has to be exposed to the radiation to try and get all of the marrow in all the bones. This consisted of her having to sit up on a bed and maintain this sitting position for 20 minutes. The patients have their legs and arms taped down so that they don’t move. Rachel did a great job and even fell asleep during part of the procedure. We were able to watch her on a camera and talk to her in the room through a monitor. This was very difficult for Jackie and I because everything for the last 1½ year had built up to this moment and there was no turning back. Everything that had been done in the past had been to monitor or tests her condition. This was the beginning of procedures that could actually harm her and will life long lasting effects. Not an easy day to say the least.

After the procedure Rachel wanted to walk back to her room. (This was the only time she will be allowed out of her room.) But to do this she had to wear a surgical type mask to keep germs from getting into her lungs. (When we are eventually discharged from the hospital she will have to continue wearing these masks until her immune system strengthens.) Well, not to let her little brother feel left out of anything, Rachel also got a mask for Michael to wear. So we walked back to Rachel’s room with two masked kids instead of just one.

The rest of the afternoon and the night didn’t get much better, in fact it got worse. Around 3:30 p.m. Rachel started feeling the effects from the radiation. She became very tired and started throwing up. The nurses had given her anti-nausea medication but it wasn’t working. They increased the medication but it still did not have much effect except to make her delirious. She then began to get a fever and it hit a high of 102. To complicate matters she then had a nosebleed due to her lower platelets. Her hemoglobin count also dropped to 7.3 The doctors were unsure if she had an infection and this was possibly causing the fever. Several blood cultures were done and she was given antibiotics along with a transfusion of platelets and red blood cells. She also underwent a chest x-ray. This appeared clear and she was most likely having a reaction to the radiation.

During the night the fever broke and this morning Rachel is feeling better and she has her appetite back. Today she received two I.V. bags of chemotherapy and as of 3:30 p.m. has not had a reaction yet. She has also started receiving some anti-rejection medication to guard against graft vs. host disease (GVHD). In the next few months GVHD is a MAJOR concern. This is when the body rejects the new bone marrow and the transplant could fail. There are mild cases of GVHD and sever cases of it. Minor can be as simple as a skin rash. The sever case is when the new marrow does not engraft and the body shuts down. Rachel vital signs are good and the nurses and doctors are pleased with the “speed” in which the chemo is traveling through her body. This is the first day of chemo and she will have to undergo three more.

Rachel is in good spirits and even learned how to flush her own intravenous line with fluid. She was very proud of this. (I’m sure she will be doing the same thing later to Amada’s line.) She insists on getting out of bed and sitting on the futon and watching TV or doing other activities. Not to let an automatic bed go to waste, Michael hopped right up onto it and of course had to adjust all the settings with the power buttons. He and Rachel are enjoying watching a bunch of Disney movies for the afternoon while Mom grabs a quick power nap and I update the web page. She is falling asleep and has a small cough and the chills starting but we are enjoying some quiet moments because I’m sure they won’t last.

We will keep you posted on how things progress. Take care.


Mel

Thursday, April 26, 2001 at 11:43 PM (CDT)

First I’ll start off by saying Rachel is fine. We arrived at the hospital bright and early at 7:15 a.m. Thursday morning and she did not go into surgery until almost 10:00 a.m. The surgery took almost an hour but her central line (also known as a Hickman) was put in without any problems or complications. A central line is a thin plastic tube that is inserted into your upper chest just below the collarbone area, and the tube goes directly into a vein leading to your heart. The tube then comes out your chest and a foot long section of it is left outside of your chest. The end of the tube has a V on it. One of these ends is for drawing blood out of it; the other is for administering medications and the chemotherapy drugs. This makes it much easy to draw the blood from Rachel without having to try and find a vein in her arms all the time. We all know how well that goes after a week or so.

Rachel was actually looking forward to having “her line” put in to save her arms from all the recent bruising. (Plus I think she liked the idea of having something that Michael couldn’t have or play with). I will sidetrack for a moment to tell you of a lighter moment during the surgery but first I have to give you a little background.

Bill & Cathy Tate are friends of ours. While Bill and I share the same profession, we hadn’t seen each other in a while. We had the unfortunate (and fortunate) experience of being reacquainted this past January at the CT Children’s Hospital. This was due to their 19-month-old daughter Amanda, being diagnosed with leukemia. Rachel took an immediate likening to Amanda and started drawing her pictures to cheer her up. Ever since then we have visited Amanda every time we were at the hospital and Rachel is always looking at Amanda’s web site pictures. There is a strong bond between parents of ill children regardless of anything else. I firmly believe in my heart that there is a stronger bond between the children. It is unspoken, but it is there. They know the pain each other feels and they try to help each other feel better even if it just to have someone to play and laugh with.

Well Rachel cares very much for Amanda. So much in fact that she has a small baby doll that she has named Amanda. For the past two weeks Amanda has gone everywhere with Rachel (including the movies). Amanda has watched Rachel go through all the testing last week and has sat through all the meetings with the various doctors. Rachel changes her, feeds her and takes care of Amanda in every way.

Today Rachel had to undergo surgery to have her central line placed. Well guess who else had surgery today? Yes, Amanda is doing fine and recovering in Rachel’s room. The surgeons (upon Rachel’s request) also placed a real central line in Amanda’s chest and had the same ports coming out for the medications. I can’t wait to get the bill from the insurance company for that surgery :>)

So I think what has helped Rachel deal with everything so well is that she has someone to take care of. So little Ms. Amanda Tate even though you are back in Connecticut and have been in the hospital lately you are still helping your friend Rachel dealing with a lot of things that most 7 year olds never have to face. Thank you sweetheart.

Rachel & “Amanda” made it out of surgery okay and were discharged from the recovery room after 1:30 p.m. We then wheeled “the girls” up to Rachel’s new home for the next month or so. She was admitted to the 4th floor of the hospital where the isolation rooms are. Rachel was admitted to room # 8 of the transplant ward. The room is approx 12’ x 18’ and has a special air filtering system to keep the germs out. She is not allowed out of the room for any reason due to the possibility of infection. She is allowed to have visitors including Michael as long as everyone is healthy and germ free. So let’s hope we don’t sick in the next few months.

The room was a typical hospital looking room but that wouldn’t last for long. The staff encourages the patients to decorate their rooms anyway they want to. So Rachel broke out the Power Puff Girl decals and stuck them on the windows, doors, and walls. We then added some glow-in-the-dark smiley faces along with moons and stars to the walls and ceiling. The sheets were changed to the Power Puff Girls and a matching comforter was added to the bed.
So the room now has the “Rachel” look to it. Tomorrow she gets to paint decorations on the windows to her room. She has promised Michael that he can paint the Batman insignia on part of the window. (Next thing Mikey will probably be looking for the Bat Cave around the hospital.)

Tomorrow morning Rachel is scheduled to undergo the total body irradiation to start suppressing her bone marrow. The chemo medications will start on Saturday.

Jackie is staying at the hospital with Rachel. I’ll be taking Michael back and forth to the hospital everyday. Jackie and I will rotate “night duty” at the hospital occasionally. The phone number for the hospital room is (612) 273-0225. If no one answers don’t be concerned. We have to leave the room occasionally for the cafeteria and other things. There is no voice mail on Rachel’s phone, so just call back. Our apartment address hasn’t changed it is in the lower left corner of this web page under hospital information. If you want to mail Rachel any cards, etc. Please send them to the apartment. Thanks.

Got to try and getting some sleep (yeah right). I’ll take some pictures of the “new room” and post them in the photo album in the next few days.




Mel

Tuesday, April 24, 2001 at 10:59 PM (CDT)

Today was almost a repeat of Monday trying to get blood from Rachel’s poor arms. Her arms are pretty well bruised and have a bunch of old needle marks. The nursing staff tried for an hour trying to get a needle into her arms. They didn’t have any luck because her veins kept collapsing. The blood work was definitely needed because she needed the counts done on her blood because her platelets have been depleting more rapidly.

Needless to say it wasn’t the start of a good morning. Hey poke me with a needle for an hour and I would be having a bad day also. Doctor Orchard came in and looked over Rachel’s arms and veins again and came up with a better idea. Instead of using the “usual” spots for drawing blood (the inside of the elbow or the back of your hand) he decided to use the veins on the inside of her wrist.

While I realize this wasn’t a new concept but after watching Rachel being poked with needles for several hours over 2 days anything was an improvement. It took the doctor over half an hour to get a line into a vein that worked. The Doctor and nurse were excellent. Jackie and I were both impressed that a doctor did the actual blood draw (this is always done by the nursing staff.) It made us feel that much more comfortable with the staff.

We then talked with Doctor Orchard for almost 2 hours about Rachel’s tests results over the past week and a half. So far everything looks okay. There were two spots that showed up on the chest scans. Dr. Orchard wasn’t overly concerned about these and the spots will be monitored further during Rachel’s admission. He did state that the leukemia cells were growing in her body but it wouldn’t affect the bone marrow transplant because the cells were only at about 14%. Otherwise she looks healthy enough to proceed with the bone marrow transplant.

After the meeting, Rachel needed another platelet transfusion. This took the rest of the afternoon and Rachel was very tough during the whole day. We decided with the doctor to leave the I.V. line in Rachel’s wrist. Otherwise she would have to undergo another round of trying to place an I.V. line into her on Thursday morning. So Rachel’s right wrist was taped to a small board and the I.V. line was taped in place. We were shown how to use a syringe to flush some anti-clotting solution through the I.V. line for tomorrow morning. This way when Rachel undergoes surgery Thursday morning she will already have the I.V. in place and after the central line (plastic tubing) is placed into her chest they will remove the I.V. from her wrist. So for today and tomorrow she is walking around with a small white “splint” type board on her wrist with an I.V. tube attached directly into her vein. This doesn’t slow her down one bit. She is still caring for all of her babies (dolls) and tucked them all in for the night. Of course we will have to monitor the line closely to make sure it doesn’t get pulled out of her wrist during the night.

While this whole day may seem like a lot for a 7 year old to handle, Rachel did great. The doctors and nurses were impressed that she could handle as much as she has and still have a positive attitude. She has a tough and surviving type attitude. Please remember that in the next few weeks because the ride is going to get rough.

Hang in there gang. We have a “day off” tomorrow from the hospital and then Thursday morning we have to be there at 7:15 a.m. to start Rachel’s admission.


Mel

Monday, April 23, 2001 at 11:21 PM (CDT)

Yesterday we enjoyed a nice relaxing Sunday afternoon. We couldn’t do much outside due to the heavy downpour of rain. So we took the kids to the Minnesota Science Museum in St. Paul. They loved it and saw a bunch of different exhibits including Michel’s favorite – the dinosaurs.

As we were leaving we got a close up view of the Mississippi River and all the flooding it is causing in downtown St. Paul. The river was extremely high and had flooded several streets and parking lots that were closed off. We have heard on the news that this is the worst flooding in 30 years. During the downpour we even met a guy named Noah who was building some kind of boat due to all the rain. Whoever thought the weather in Connecticut was crazy hasn’t seen anything until you come out this way. The upper part of the State even got 7” of snow.

We paddled our way back to the apartment so we could make it to the hospital Monday morning for more tests. Today Rachel was scheduled for a kidney function tests. We arrived there and for the next 2 hours they kept trying to get an I.V. line into Rachel’s arms and hands. Unfortunately due to all the needle sticks and pokes she has had the last week they couldn’t get an I.V. started. Her veins kept collapsing every time they tried inserting a needle. Several nurses and specialists tried but no one had any luck. So the test was put on hold and we just have to monitor her urine output. The reason behind this test is so when she is given the chemotherapy this weekend they know how fast to “flush” it through her system. The longer the chemo stays inside the more damage it can cause. So when she is given the chemo she will have to get out of bed every 2 hours to urinate and “flush” her system and the chemo. Sounds like a nice restful night of sleep huh?

So after Rachel “the human pincushion” was let out of the hospital this morning we decided she deserved a treat. She and Michael have wanted to see the movie “Spy Kids”. So we took them to an early matinee. It was a good movie except for the lady who fell asleep and started snoring. (I promised Jackie I wouldn’t mention her name). She didn’t really snore but let’s just say she doesn’t remember too much of the movie. But the kids did enjoy it and that’s what counts.

Tomorrow we have to meet with the doctor and go over all of Rachel’s tests results. Let’s hope it is some good news for a change.

“Talk” to you soon,

Mel

Sunday, April 22, 2001 at 11:20 AM (CDT)

The rest of the week at the hospital was not as hectic as the first half was. On Thursday Rachel had her blood counts done and they were fine. We then had a meeting with Rachel’s assigned social worker and then we met with a doctor from the Infectious Disease Department. She educated us on how much children with Fanconi Anemia are extremely susceptible to infections and germs during and after the transplant process. We will have to be very careful with people that are around her and what foods she can eat. A small example of this is that she cannot have blue cheese dressing because of the mold spores inside the dressing. Rachel was pretty upset with this news because she loves to have buffalo wings with blue cheese dressing and a cold beer after work. But she is young and will have to deal with this. Another food item that is on the do not touch list is yogurt due to the bacteria found inside. Okay maybe I should not be making everyone hungry right now but it was interesting on what we take for granted as being “safe” food sometimes really isn’t.

The best way the doctor explained Rachel’s immune system after the transplant is in this way. After a person receives a donor’s marrow their immune system is brand new. It is just like a newborn baby’s immune system, it does not have enough defensives built up to fight off infections and germs. Since her system will be “brand new” she will eventually have to receive all of her normal childhood immunizations all over again. This will occur when her system is strong enough to take the immunization shots.

We did receive some disturbing news on Rachel’s bone marrow aspiration results. Her cells are starting to develop leukemia clones. This is a very common complication of the disease. The doctors do not feel that the leukemia clones will affect the outcome of the transplant. The down side to this is that they are unable to take out an extra piece of her bone marrow as a backup if the transplant doesn’t work. What the procedure would have called for is to “replant” her own marrow back into her if the transplant failed. But this is no longer a viable option because of the leukemia clones. So the transplant HAS to work.

This news made us realize that we are making the right decisions at the proper time in Rachel’s life. There are times when children are diagnosed with leukemia but the underlying disease of Fanconi Anemia is not diagnosed or detected. She is receiving the proper treatment for the proper disease from a very professional staff that specializes in doing transplants for F.A.

On Friday Rachel underwent a CAT Scan of her chest and sinus. Luckily no cats were detected and she did fine on the tests. So Friday we had the rest of the day “off” from tests, doctors, and long walks around a very large hospital trying to find different labs for testing. So what did we do? We went for long walks around a very large mall trying to find different stores.

Yes, it was back to the Mall of America and to visit Camp Snoopy (the 7-acre amusement park inside the center of the mall) We went early to avoid the large crowds and to keep Rachel “germ free”. They had a great time riding the rides and visiting some of the stores. I could go into a long story about how large this mall really is but to get an idea go to the web site www.mallofamerica.com I posted a few new pictures of the kids at the mall in the photo album.

This weekend the weather was lousy. Very overcast and cold. So get ready Connecticut because it seems like we get the “weather” here about 2 days before you do. The State of Minnesota didn’t need any more rain due to the rivers overflowing. Some of you have asked if we are near the Mississippi River because of its overflowing banks. We are about a 10-minute drive from the mighty river and drive over it everyday. Some towns are underwater but they are not near us. We are east of St. Paul and about a 22-minute drive to Minneapolis and the hospital.

So with the lousy weather this weekend we are just relaxing and not doing much. I made the mistake of going to the Mall of America on Saturday to pick up a new pair of running shoes. To say it was crowded is an understatement. There are 2 seven story-parking garages there and they were both filled to capacity. It seems that some team named the Minnesota Vikings was at the mall with some of their draft picks and some local radio and televisions stations signing autographs, etc. Needless to say they drew a little bit of a crowd.

Today we are going to take the kids out (not to the Mall) and enjoy our last weekend together in the apartment. Rachel is scheduled for more tests on Monday (big surprise huh?) and then is admitted to the hospital on Thursday. So this weekend is the last time the four of us will be able to enjoy normal activities until Rachel is discharged from the hospital. Then we will have to be careful of the activities because of her immune system.

Take care gang. Thanks for the “care packages” that have been arriving. Keep ‘em coming (love the homemade cookies) and the kids love getting the letters and cards. Hope this wasn’t too long of an update.


Mel

Wednesday, April 18, 2001 at 11:02 PM (CDT)

Well the weather improved here today. It was finally sunny and almost 58 degrees. It must have had an effect on the day because today was an easy day compared to the last two.

Today Rachel under went a renal ultrasound. Don’t worry she’s not pregnant. They just wanted to get a baseline of all her lower internal organs. This way the doctors will know if the disease, chemo, radiation, or other medications have any effect on her organs. We then had to attend a consultation in the radiology unit. They told us all of the side effects from the radiation. I will spare you all of the details and the short and long-term side effects. They also took all of Rachel’s body measurements for the scheduled radiation next Friday.

Next on our journey we were off to the Pulmonary Function Tests. Basically they were testing her lung capacity. She did well on all the tests and for a 7 year old she followed all of the instructions without complaints or mistakes. At one point she had to go into a metal booth that had a clear plastic door on it. Well the doctors had placed little decorative stickers that looked like fish on the door, giving it the appearance of a large aquarium. When Rachel went inside the booth and sat in the chair, the doctors closed the door. Michael was sitting in the room with Jackie and I and he started to become very concerned for his big sister because she was “under water and they closed the door on her.” We had to reassure him that she was fine and she wasn’t underwater. He would have no part of it and kept pacing the floor watching Rachel very closely as she waved to him and completed the 10 minute long test. Michael had found a gold colored paperclip in the hospital earlier and it was his new prized possession. Well as soon as Rachel exited the booth Michael ran over to her and gave her his paperclip and told her it was now hers because he had been worried about her and she had done a good job on the tests. Rachel being the proud big sister and trying to calm her concerned sibling replied with a sarcastic voice “oh gee THANKS, just want I always wanted!” Needless to say I haven’t a clue as to which garbage can Rachel threw the “prized possession” away in. It was one of those lighter moments that make you laugh and forget why we were really there.

The rest of the afternoon we had off so we went to a local restaurant for lunch. I think the toll of getting up early every morning and going to the hospital for tests all day long was beginning to show. How do I know this? Well I’m a trained professional (some of you might argue that point) but the clue was when Mikey fell asleep during lunch. He never sleeps during the day but halfway through his meal he fell fast asleep sitting in his chair. He slept through the rest of lunch but woke up as soon as I carried him out to the car for the ride to the apartment.

The rest of the afternoon we relaxed and tried catching up on things around the apartment. Since Rachel received her transfusion of whole blood on Monday she is full of energy. Her hemoglobin is very high right now so she is WIRED. She had to put on a little impromptu dance routine for us while she played her Back Street Boys CD. She remembered the moves from when she had her dance recital last year. Today’s dance was a funny show and she is enjoying life to it’s fullest right now. We are just trying to keep up with her.


Mel

Tuesday, April 17, 2001 at 11:48 PM (CDT)

Today was another long day of meetings and testing. The day started out with an x-ray of Rachel’s chest and another of her teeth. This was followed by a meeting about the central line that will be implanted into her chest and into a vein of her heart next week. She then underwent an electrocardiogram and echocardiogram of her heart. Which she passed with flying colors.

We also attended several other meetings. One of which was reviewing the entire 8-chapter book they gave us on her allogeneic transplant and the risks involved. This meeting was very long and covered all of the NUMEROUS medications she will be taking for the next few months to a year. We also reviewed her tentative schedule for the total body irradiation and chemotherapy that will start at the end of next week.

Rachel got through all of today’s tests in great spirits and had fun playing with Michael in between tests. Rachel also took the time to draw a picture for her 1st grade teacher and class that we will be mailing out. It was amazing watching her and Michael playing together without a care in the world.

Whoever said, “Ignorance is bliss” certainly said a lot with those 3 words. After a long day of meetings about medications, infections, chemotherapy, and other fun filled items it would be nice to go back to being ignorant even if it was just for a day.

Well gang, have to try and get some sleep before tomorrow’s meetings and tests. Tomorrow’s schedule looks a little lighter and is only half a day. Thanks for all the
e-mails and notes in the guest book – they help more then you’ll ever realize.


Mel

Monday, April 16, 2001 at 10:37 PM (CDT)

Greetings from the blustery State of Minnesota where today it was a high of about 25 with a strong wind and snow !!! I thought we were coming out here for the spring weather. Maybe in a few weeks it will warm up.

Yesterday was a very nice and relaxing day. In the morning, after the Easter Bunny's gifts were all opened, Jackie was able to check out the gym in the apartment complex and I was able to fit in a 5 mile run. We were then invited to Easter dinner over Chuck & Sue Lutchen’s home. Chuck is a retired Sgt. from the St. Paul Police Department and the head of the Minnesota Fraternal Order of Police. He has been of great assistance to us and it was great of him and Sue to open their home to us. The kids had a great time playing with their children, Rachel (age 6) and Jacob (age 7). It sure was delightful watching the two Rachels playing together without a care in the world. Of course Jacob and Michael were in their Nintendo glory and enjoyed showing each other their favorite games.

Monday started off at 5:30 a.m. getting the kids up and ready for the day at the hospital. We arrived there at 7:30 a.m. and had an entire day of tests. We met with one of the doctors and were very pleased with the entire staff throughout the day. Rachel was a trooper even when she had to give up 12 vials of blood to start the day off. The staff was impressed that she didn’t flinch or get upset with all the blood being drawn. After the blood draw she had to undergo surgery and have a bone marrow biopsy. This procedure went very well but took almost the entire day. Rachel’s platelets and red blood were low so she had to receive both a platelet transfusion and a red blood cell transfusion.

Needless to say it was a VERY long day at the hospital and clinic. Tomorrow will bring even more tests and another full day. We did receive some positive news about the donor. We were told that he passed all of the medical tests and has officially given his written consent to donate his marrow. So if everything stays “on schedule” the transplant will take place on May 3rd. The only thing we can be told about the donor is that he is a 39-year-old male. We don’t know where in the world he is or anything about him. We can meet him after one year if he agrees to it. But in the meantime we’ll keep everyone posted on the status of the transplant.

I’ll write more tomorrow night. I have to try and get some sleep so we can get to the hospital early again. Take care and Stay Safe


Mel

Saturday, April 14, 2001 at 11:40 AM (CDT)

If you saw yesterdays update you will see that I had to end it quickly because Michael felt like visiting the emergency room again. (To view past journals click on the history icon in the upper left corner).

First off Mikey is fine. We went to the emergency room and they found a massive ear infection in his left ear that wasn’t there the day before when he was checked at the bone marrow clinic. He was such a trooper in the E.R. because he had blood work done and had to receive 2 injections of antibiotics in the thighs at the same time. He didn’t get upset and the nurses were rather impressed. Actually I think he touched their hearts because after being there a while he began to perk up a little instead of sleeping in my arms. He soon had his new sunglasses on and was playing with Rachel. He looked like a miniature Elton John and was laughing and more himself.

Well we tried to make the best of the situation and Michael seemed to improve a little after his shots. We finally were able to have dinner around 9:30 p.m. and I was too tired to update the web site last night when we got home around 11:00. The new pictures are posted in the photo album.

Jackie is at the clinic with Michael right now. The doctors just wanted to make sure everything was clearing up with his infection. He did sleep through the night and his temperature was down to 99 this morning. Actually I think the doctors just wanted us to come to the hospital again (3 times in 3 days and we thought this would be our week to get settled in before Rachel starts all her tests next week)

Michael has been very anxious to go to the Mall of America for the past 3 days. We told him maybe we would try today depending on how everything went. So we will probably spend the afternoon there and try and have a “normal” day (if we can remember what normal is again)

Well gang, we hope everyone has a great Easter and we will “talk” to you soon.
Hang in there.

Mel

Friday, April 13, 2001 at 05:24 PM (CDT)

First off we would like to thank my sister, Sue for updating the web site yesterday. The phone company had made a mistake and couldn’t hook our phone line yesterday. But we had pleasant surprise this morning considering it was Friday the 13th. The phone line was hooked up. So now we feel part of the real world again and can actually talk to everyone and obviously update the web site.

Michael still hasn’t broken the fever he has. The cultures still are negative so we don’t know what he has. Yesterday the fever wasn’t slowing him down but today he isn’t himself. He is very tired and just not himself (he didn’t want to play his Nintendo if that gives you any idea how tired he really is) The doctors have started him on Amoxicil to see if that helps break the fever. We will wait to see what tomorrow brings and if we will be making another trip to the hospital with him.

The apartment is coming along. The furniture was delivered while we were at the hospital and was set up upon our return. I couldn’t even image having to bring furniture from Connecticut out here for 5 months and then have to pack it all back up for the move back. We are still in the process of finding all the little things that we have to get for the “new place”. But we figured we should try and get it all done before next week when Rachel starts her testing on Monday. It will be a full 3 days and then easier days on Thursday and Friday.

We have posted our new address below and our phone number at the apartment. We did not list Rachel’s hospital room because there will be restrictions on what is allowed in the hospital for infection control reasons. Also this way nothing sent will become “lost” in the hospital mailing system. When she is discharged from the hospital the address of the apartment will remain the same.

I also posted a few new pictures in the photo album. Hope everyone is doing well and we miss you all. Thanks for all the entries in the guest book they do cheer us up.

As I was getting ready to post this we took Mikey’s temperature again. It is still very high so we now have to take him into the emergency room in Minneapolis. I’ll keep you posted. Gotta go.

Mel

Thursday, April 12, 2001 at 06:28 PM (CDT)

The Hardy family arrived safely in Minnesota late yesterday. They began moving into thier temporary new home today and besides difficulty with the phone company and Michael's visit to the hospital today everything else is going as planned.

Michael went to the hospital today because he had been running a high fever since Wednesday, the fever broke during the visit at the hospital and has come back again this evening, from what I hear this has not slowed Michael down a bit. Mel & Jackie are waiting to hear back from the Dr. with the results from his culture tommorow to see what will happen next...

The phone was not connected today as planned but hopefully will be up and running tommorow. Once the phone is hooked up Mel and Jackie will be back on line.

Rachel is doing well and enjoying all of the adventures in Minnesota, last seen at Target helping Mom and Michael shop for household supplies.

The new address for the Hardy family is:

2091 D Vining Drive
Woodbury, MN 55125

Love,
Auntie Suey

Wednesday, April 11, 2001 at 08:12 PM (CDT)

Today started off at 4:00 a.m. with Michael waking up in the hotel crying and saying his stomach was upset. We got him back to bed but noticed that he was burning up. We took his temperature and saw that it was 103. This wasn’t going to b e a good day considering we were out of our home “comfort zone” away from the Connecticut Children’s Hospital and still 300 miles away from the hospital in Minnesota.

So Michael took some Tylenol and we grabbed a quick bite to eat before heading onto
I-90 for Minnesota. The weather was not cooperating at all. We had to drive through HEAVY thunderstorms. Oh did I mention that I-90 is a 2-lane road and it seemed every 18-wheeler in America was also driving on it. Even though you could only see about 40 feet in front of you with the rain and the heavy fog, this didn’t slow anyone down from driving 65 mph plus. It was a very long and stressful 300-mile drive to say the least.

The good news is we FINALLY made it to Minnesota around 3:00 p.m. Only a short 1,300 miles. Michael’s fever seemed to break and we found our new apartment without any problems. The people at the complex are very nice. The old tenant, who had owned a dog, had recently moved out. The corporation who owns the complex knew the reason for our stay decided to replace all of the carpet inside the apartment for us because of Rachel’s condition and limit her exposure to old germs in the carpet. This was extremely nice of them. We couldn’t move into the apartment because the furniture is being delivered tomorrow. We saw the apartment and it looks great. Can’t wait to move in tomorrow and stop living out of suitcases and unloading and loading the car.

So tonight we are staying at one more hotel. Of course now that the doctors at Fairview University Medical Center have gone home for the evening, Michael’s fever is back. So we will see how he is feeling in the morning. If it wasn’t for his warm skin you wouldn’t be able to tell he wasn’t feeling well. He is playing with Rachel and of course his Nintendo gameboy. Hopefully he will sleep through the night and his fever will break. Otherwise we will have to get him into Minneapolis to see the doctors and at the same time work on moving into the apartment with the furniture company. Oh well you really didn’t expect our first day in Minnesota to be stress free did you??

We will update everyone with Mikey’s condition and our new address tomorrow if the phone company hooks up the phone lines at the apartment. Don’t worry about Mikey though he is going to be fine (as long as the batteries in his game boy hold out hahaha)

Mel

Tuesday, April 10, 2001 at 09:51 PM (CDT)

This was from Monday April 9th but we couldn’t get onto the Internet last night:

Greetings from Dubois, PA. (about 100 miles east of the Ohio border and only 20 minutes from the home the famous Punxsutawney Phil). We left Connecticut around 11:00 a.m. this morning and traveled 400 miles. The kids had a great time playing with all of their new “car toys”. In other words Mikey was playing his Nintendo Gameboy and Rachel was drawing pictures and writing letters to her friends. They also enjoyed all the snacks, card games and other toys everyone gave them. Jackie & I enjoyed the great summer like day listening to CDs while traveling through the mountains of Pennsylvania.

The nice summer day didn’t last long because we ended up driving through a severe thunderstorm, which according to the news destroyed several area buildings. Tomorrow we are going to travel to Ohio through Cleveland and head towards Chicago. Anyone following the route we are taking I-80 west.

We will try to write more tomorrow. The kids are having a great time traveling and we are trying to make it seem like a vacation for them.


Tuesday April 11th

We drove 600 miles today and made it to Rockford, Illinois. We finished driving through Pennsylvania. We went through Ohio, Indiana, and Chicago today. Of course we hit rush hour traffic in Chicago (6 lanes of fun). But it wasn’t too bad because we enjoyed driving through the city slowly and seeing the “sites”. Driving through Ohio and Indiana was very boring, nothing but flat farmland to look at. We also crossed over into the Central Time Zone so we are now officially an hour behind all you East Coasters.

For you map followers we are now taking I-90 into Wisconsin and will follow that route all the way to Minneapolis tomorrow. We have only about 250 miles left to go.

The kids love traveling the only disadvantage is that Michael falls asleep in the car for half an hour or so and is awake until about 11:00 p.m. and wants to talk to everyone. Of course staying in one-room hotels rooms makes it real easy for everyone else to fall asleep (yeah right!!)

We will try and write tomorrow, depending on where we end up. Our apartment won’t be ready until Thursday and the furniture isn’t being delivered until then. But we will make the best of it.

Mel

Monday, April 09, 2001 at 01:05 AM (EST)

Well we leave in a few hours for Minnesota so I’ll keep this short. This weekend was incredibly difficult. Not only did we have the stress of trying to pack up our lives up for the next 5 months but we had to say goodbye to a lot of friends and family. That was very difficult considering the circumstances.

I have said this before but I feel it’s worth repeating. We will ALL get through this together. We know we have the tremendous support and Love of a lot of people. You don’t know how much reading the entries in the guest book helps us. Please take a minute and sign the book when you have the time. Rachel loves hearing them as we read them to her (but to tell you the truth I think Jackie & I like them even more).

I’ll try and update everyone while we are on the road to Minnesota. I guess this is how Charles Karault must of felt when he reported on his road trips. But I betcha old Charles also didn’t have to finish packing at 1:00 a.m. so I got to go finish. Hang tough gang and we will write soon.

Mel

Tuesday, April 03, 2001 at 12:58 PM (EDT)

Things are moving very fast as we try to prepare for our move. Rachel is doing very well. She will be getting her final platelet transfusion on Thursday. It will be sad saying goodbye to the staff at the Children’s Hospital in Hartford. They have become a big part of our “extended” family for the past year and a half. They are true miracle workers and have our deepest appreciation and gratitude. We will see them when we get back from Minnesota but they will never be far from our thoughts while we are away.

We would also like to thank Dan Champagne, John Collins, and Don Poist for donating their platelets weekly for the past 6 months to help stabilize and prolong Rachel’s condition. We are forever grateful to this trio of heroes.

Well we are getting closer to our departure date to Minnesota. We will be leaving Connecticut on April 9th for the drive to Minneapolis. We would like to thank everyone who has been giving the kids the gifts to take with them and to use while we try to pass the time (and months) in the hospital and the apartment. (The phone cards and video store cards will come in very handy) Thank goodness Minnesota is famous for having something besides Jesse Ventura as Governor – they are also known for The Mall of America. We plan on spending a lot of time there to help pass the time.

A lot of people have been asking for our “new address” in Minneapolis. We have a tentative apartment address and we will post it on the web site as soon as we arrive there. This is in case something changes with the apartment location between now and the time we arrive.

Friends and family have offered to come out and stay with us while we are there for the 4-5 months. (It may be longer if there are complications.) Everyone is more than welcome to come and stay will us. We would LOVE the company and the kids would love seeing their friends. All we ask is that if you are planning on coming out to visit, please let us know so we can coordinate the dates. This way we don’t have too many guests at the same time. We will have a 3-bedroom apartment so that guests can stay with us and not have to stay at a hotel.

Thank you to everyone for his or her support and we will keep ya posted. Hang in there gang

Saturday, March 24, 2001 at 09:43 AM (EST)

Sorry for not updating the web site on a daily basis but we have been busy the past few weeks getting ready for the move to Minneapolis. The donor search is going very well and the first bone marrow donor is scheduled to undergo a complete physical on March 29. Hopefully everything goes well. The good news is that there are other donors who match Rachel if the first donor does not pass the medical exam.

We have found an apartment to stay in while we are in Minneapolis. We are now working on making the arrangements to have the apartment furnished. We will post our "new address" on the web site once we get out there. We will be leaving Connecticut on April 9th or April 10th if the schedule does not change with the donor. We will be driving out to Minnesota so that we will have a car to travel back and forth to the hospital with.

On a happier note Rachel will be celebrating her 7th birthday on Monday March 26th. So this weekend the parties start. Friday she had a birthday party at the local bowling alley where her and her friends had pizza, cake, and bowled a few games. (A few pictures are posted in the photo album of the web site.)

Rachel wanted to go see her favorite hockey team one last time before we left. So Saturday night it is off to see the Hartford Wolfpack and their mascot Sonar!!

We will keep everyone posted on the progress of things.

Friday, March 23, 2001 at 11:18 PM (EST)

Sorry for not updating the web site on a daily basis but we have been busy the past few weeks getting ready for the move to Minneapolis. The donor search is going very well and the first bone marrow donor is scheduled to undergo a complete physical on March 29. Hopefully everything goes well. The good news is that there are other donors who match Rachel if the first donor does not pass the medical exam.

We have found an apartment to stay in while we are in Minneapolis. We are now working on making the arrangements to have the apartment furnished. We will post our “new address” on the web site once we get out there. We will be leaving Connecticut on April 9th or April 10th if the schedule does not change with the donor. We will be driving out to Minnesota so that we will have a car to travel back and forth to the hospital with.

On a happier note Rachel will be celebrating her 7th birthday on Monday March 26th. So this weekend the parties start. Today she had a birthday party at the local bowling alley where her and her friends had pizza, cake, and bowled a few games. (A few pictures are posted in the photo album of the web site.)

Rachel wanted to go see her favorite hockey team one last time before we left. So Saturday night it is off to see the Hartford Wolfpack and their mascot Sonar!!

We will keep everyone posted on the progress of things.

Saturday, March 10, 2001 at 08:29 PM (EST)

On Saturday 3/10/01 at 11:00 a.m. the drawing for the raffle for THE RMH CHILDREN'S MEDICAL FUND was held at the Rockville Bank. We would like to congratulate the following people who won the prizes.

1st prize: TRIP FOR TWO-CLUB MED IN FLORIDA 8 DAYS/7 NIGHTS
Mike Albert of Vernon, CT

2nd prize: TRIP FOR 2 SANDALS ROYAL BAHAMAS BEACH RESORT
Karen Lutz-Lento of Middletown, CT

3rd prize: GAS LOG SYSTEM
Jim Miller of East Hartford, CT

4th prize: AMES GIFT CERTIFICATE
Terry Hardy of Carlisle, Iowa

5th prize: HAIR SERVICES by Shari Corlett
Julia Mika of Springfield, Mass.

6th prize: BOB'S STORE GIFT CERTIFICATE
John Ganly of East Hartford, CT

7th prize: COUNTRY DINER IN ENFIELD GIFT CERTIFICATE
Michael Belchak of Vernon, CT

8th prize: COUNTRY DINER CERTIFICATE
Norma Posocco of Willington, CT

9th prize: SHAWS SUPERMARKET GIFT CERTIFICATE
Donald LaChapelle of East Hartford, CT

We would like to thank everyone who made this raffle possible. We are very grateful for the outstanding work of Diane Wheelock, Don Skewes, the Vernon Junior Women’s Club, the Rockville Bank, and everyone who helped sell the tickets and everyone who purchased the tickets- you are all WINNERS in our hearts. THANK-YOU

We also came out winners this week. We were notified by the hospital in Minnesota that they have found a matched bone marrow donor for Rachel. We are very grateful that they have found a donor. The donor still has a few steps to go through (a medical examination and a formal written consent) but things are moving very quickly.

The TENATIVE schedule is that we will be moving to Minneapolis around the 2nd week of April. Rachel is scheduled to start tests at the hospital on April 16th. She will be admitted on April 26th and is schedule to have her transplant on May 3rd We will have to stay in Minnesota at least 100 days after the transplant before we can move back to Connecticut. Please keep in mind that this schedule is TENATIVE. As we all know things change very quickly and without warning. But these dates are the latest plans.

We will keep everyone posted as we began a long journey into the unknown. We know that we are not taking this journey alone because we have the support of our family and friends. Thank you.

Saturday, March 03, 2001 at 1:51 AM (EST)

This has been a busy week for us. On Monday 2/26, Rachel had to undergo another bone marrow aspiration. This is a short one-day surgery where the Doctors take a piece of bone marrow out of her hip. They then examine it to see what the bone marrow cells are doing. The good news is that there was no evidence for leukemia this time. But there are still a decreased number of megakaryocytes that look small. These are the platelet making cells. We are still awaiting the cytogenetics results for further information.

On Thursday 3/1, we took the kids to New York City for the day and met with a Doctor who is doing world wide research on children with Fanconi Anemia. This was more of a networking / fact gathering meeting. The doctors are gathering information on all the different types of FA in hopes of someday being able to clone all the various FA genes. Some of the FA genes have been cloned. The type of FA that Rachel & Michael have is the type A. The FA-A gene was cloned in 1996. But this gene is the hardest in which to detect the exact mutations (points of defect) that cause FA because the gene they cloned is
very large, and almost every family has their own private mutations. They
are trying to find the mutations in our children, it just takes longer for FA-A.
(If they are able learn the mutations of the gene then they can learn how to “attack” and reverse the effects of the gene.)

We are awaiting the results of the bone marrow donor search. The latest we heard was that they had found 5 potential matches for Rachel. They had sent out blood sample requests to the 5 people and 3 of the people had responded very quickly (a good sign). The hospital was going to run confirmation type testing on the 3 blood samples. We haven’t heard anything further but we were told the potential matches were 6 out of 6 matches. That is the best type of match that one can hope for with an unrelated donor.

Just a quick reminder there are only a few raffle tickets for the trips remaining. If you are interested in getting your tickets please contact Diane Wheelock of the Junior Womens Club at (860) 872-7792 or email dwheelock02@snet.net
To see a list of all the prizes to be awarded click on the previous journal entries link and scan down to the raffle announcement. The drawing is this upcoming Saturday March 10, 2001 at the Rockville Bank @ 11:00 a.m.


We will keep everyone posted.

Saturday, February 24, 2001 at 110:37 PM (EST)

Jackie & I would like to Thank everyone for attending the dance held at St. Bernard’s Church on Friday night 2/23/01. There were over 300 friends and family that attended. Though it was a little overwhelming for us (in a good way) it was great to see everyone there.

The dance was a HUGE success due to the efforts of: Kate Rooney, Steve Chipman, Don Skewes, Rich Haynes, Diane Wheelock, Bob O’Gara, Tim O’Connor, and ALL of the others (there are too many to list) who worked very hard on selling tickets, obtaining the door prizes, getting the food, and preparations.

We would also like to thank: The Vernon Junior Women’s Club, all of the individuals and businesses that donated over 60 door prizes for the raffle, Mark “The Shark” who donated his incredible DJ skills, and Dave Smith who generously donated his very valuable tickets to the Women’s Final Four for the raffle and contributed in many others ways.

Most of all we would like to thank all of the friends and family that attended the dance (and those that couldn’t). It was a success because of YOU and your caring.

Often times we are asked how we get through each day. We get through it because of wonderful, caring friends, and family that are there to support us during the good and bad days. Friday night was definitely one of the “good days” THANK-YOU

Monday, February 19, 2001 at 02:37 PM (CST)

A BIG THANK-YOU goes out to the following people for all of their efforts in the Haircut-A-Thon that was held on Sunday 2/18/01 at Salon Bleu in Vernon. The total they raised for the kid’s medical fund was just over $1,500.00

Christine Alfano
Corinne Contois
Shari Corlett
Susan Hardy
Roxanne Howland
Tracey Laurito
Lisa Morin
Gina Sierra
Diane Wheelock


We would especially like to thank Shari Corlett for coming up with the idea and organizing the event. It could not have been done without her.
We greatly appreciate Shirley Blue for being a great sport and allowing us to hold the Cut-A-Thon at her salon. Thank-You Shirley.

As some of you may have heard or seen on News Channel 30 yesterday we owe a BIG thank you to Gary Gibson from Manchester PD. He and his wife Robin are helping sell tickets for the raffle. Well, their co-workers at MPD challenged Gary to have his head shaved if they bought enough raffle tickets. Gary did not believe that his co-workers would raise the required money in time for the challenge. Much to his surprise they raised over $1,000 in one day!!! Gary being a man of his word did not back down.

On Sunday morning at 9:00 a.m. Gary arrived at Salon Bleu dressed in a tuxedo sporting his full head of hair. While being interviewed and video taped by Channel 30 NBC News, Gary had his entire head shaved bald by Shari in just under 5 ½ minutes.

On Monday 2/19/01 Gary's color photos were featured on the front page of the local paper, the Journal Inquirer. We also took a few photos and they are in the photo album of this web site (sorry Gary- couldn't resist)

We would like to thank Gary for being our new hero. He went above and beyond even though he had never met Rachel or Michael. He is a man of his word and will always have our deepest gratitude.

Friday, February 09, 2001 at 1:00 AM (EST)

RAFFLE FOR THE RMH CHILDREN'S MEDICAL FUND

The Vernon Junior Womens Club is sponsoring a raffle to benefit Rachel & Michael.

The prizes are:

1st prize: TRIP FOR TWO-CLUB MED IN FLORIDA 8 DAY/7 NIGHT (INCLUDES ROUND TRIP TRAIN TICKETS). PACKAGE IS A $3000.00 VALUE

2nd prize: TRIP FOR 2 SANDALS ROYAL BAHAMAS BEACH RESORT 3DAY/2NIGHT (INCLUDES A $1000.00 CERTIFICATE FOR AIR FARE) PACKAGE IS A $2500.00 VALUE

3rd prize: GAS LOG SYSTEM ($463.00 VALUE)

4th prize: AMES GIFT CERTIFICATE ($250.00 VALUE)

5th prize: HAIR SERVICES ($100.00 VALUE)

6th prize: BOB'S STORE GIFT CERTIFICATE ($100.00 VALUE)

7th prize: COUNTRY DINER ENFIELD GIFT CERTIFICATE ($40.00 VALUE)

8th prize: COUNTRY DINER CERTIFICATE ($20.00 VALUE)

9th prize: SHAWS SUPERMARKET GIFT CERTIFICATE ($20.00 VALUE)

Tickets are $10.00 each and only 2,000 tickets will be sold.

The drawing will be held March 10, 2001 at 11:00 a.m. at the Rockville Bank, 25 Park Street in Rockville. The winners need not be present to win.

To purchase tickets please contact the following people:

Diane Wheelock of the Junior Womens Club at (860) 872-7792 or email dwheelock02@snet.net

Don Skewes at (860) 872-9126 ext 270 or e-mail at dws70@juno.com

Bob O'Gara at (860) 872-9126 ext 254

Dan Martin at (860) 648-6254

Robin Gibson at (860) 645-5500 ext 12617

Gary Gibson at (860) 645-5500 ext 15004

Bill Turley at (860) 291-0143 ext 12

Tim Juergens at (860) 528-4401 dial 699 and ext 5195

We would like to thank everyone who worked very hard to make this raffle possible. It could not have gotten this far without your hard work and dedication. Thank you.

We do ask that whoever wins the trips please mail us a postcard from the beach :>) GOOD LUCK TO ALL!!!

Sunday, January 28, 2001 at 10:51 AM (EST)

HAIRCUT-A-THON FUNDRAISER

Date: Sunday February 18, 2001

Location: Salon Bleu, 54 Hartford Tpke.Vernon

Time: 9:00 am - 5:00 p.m.

Walks-Ins Only--No Appointments Necessary

Women's Cut $20.00
Men's Cut $15.00
Child's Cut $12.00-$15.00

For Additional Info call Shari Corlett at (860) 729-4730

This fundraiser has been set up by Shari so that all the proceeds will go to Rachel & Michael's medical fund. Please come and help show your support and get a haircut at the same time :>)

Please click on the previous journal entry icon to learn about other fundraisers being held for the kids.

THANK-YOU ALL FOR YOUR SUPPORT.

Also we are very happy that the Tates finally got some "good news" on their daughter Amanda. Please check out her web site and offer your support. Amanda's site is at www.caringbridge.com/page/amanda or click on the link on Rachel's web page.

Monday, January 22, 2001 at 11:45 AM (EST)

Fundraiser Dance For Rachel & Mikey

When: Friday Feb. 23, 2001

Where: St.Bernard's Church Hall -Rockville

Time: 7 p.m.- 12 a.m.

Cost: $20.00 per person/ B.Y.O.B.

This dance is open to everyone in an effort to raise funds for uncovered medical expenses for Rachel & Michael. There will be a D.J. from 96.5 WTIC FM, snacks and raffle prizes. Come relax and have fun with friends.
To purchase tickets contact the following people:

Kate Rooney at emailCHIPMAN0078@aol.com or call her at (860)872-9126 ext 286

Don Skewes at e-mail DWS70@juno.com or call him at (860)872-9126 ext 270.

Rich Haynes at (860) 872-9126 ext 258

Thursday, January 18, 2001 at 12:50PM (EST)

Just to let everyone know there are some upcoming fundraisers being planned for February. These include a raffle, dance, and a "haircut-a-thon." These fundraisers will help defer the cost of any uncovered medical expenses.

We will let you know details when they become available.

Thanks again for all your support. Rachel loves reading all the messages in the guest book.

Wednesday, January 10, 2001 at 11:01 PM (EST)

We met with the doctors at Fairview University Medical Center in Minneapolis, Minnesota on January 8,2001.

It was determined the Rachel will need to undergo a bone marrow transplant within the next 3-4 months. The search for a bone marrow donor will begin soon. We will have to live in Minnesota for 4-6 months while Rachel is being treated. We will let you know how the search for the donor proceeds and when we will have to move to Minneapolis.

Click here to go back to the main page.

----End of History----