First trip to Minnesota- Day 2

First, I want to apologize for taking so long to get this uploaded. It is a long one, with lots of information. I have attempted to work on it for days and I either fall asleep or someone else needs me and my attention. I know everyone has been waiting for this post to find out more information about our trip. I apologize, I think I am starting to feel the anxiety and depression. I am on the verge of tears all of the time now, and trying to make it through one day at a time. So for those off you who are so good to log on everyday to see what is new, I apologize for the lack of getting this one typed up. Hopefully it was worth the wait and you will all get the millions of questions you have answered.

We'll today was the main reason for coming to Minnesota. We (Ariauna and I) slept in, of course Jerry was up at the crack o' hundred as usual. Thankfully he was quite and let us sleep. We had a lazy morning at the hotel. We left the hotel about 11:30 and headed over to the Children's Hospital. If you think Primary Children's hospital is huge, Oh my gosh, this place is huge and the whole layout, parking, ect was very confusing. There was 4 parking garages, luckily all color coded and then there are 4 buildings. Thank goodness they had sent us a map and highlighted the parking area for us and where exactly we needed to go. I am sure part of it is that we have never been here, hopefully next time we will know where we are going. Here we are at the University of Minnesota Amplatz Children's Hospital.

 

 

We started out in the Journey Clinic which is their Outpatient clinic on the 9th floor. We got there and got Ariauna all checked in. They gave her a cute sun hat to wear when she starts losing her hair and a really cute pair of crocheted slippers. They told us where the bathrooms were and told us where the pantry with some food and snacks was since we are going to be here most of the day. We didn't have to wait to long when the nurses came to get her. They weighed her and measured how tall she was and got us all settled in a room. We immediately saw Tara one of the child life specialists that we met via the you tube video they made for Ariauna before we came.

It was not long after that we met Dr. Margaret McMillan. She came in along with Jessica a fellow. We spent the next three hours with them. I wish I could type everything on the blog that they told us today, but I just can't. I will tell you that my brain hurt from having so much information given to us. There was several times I got teary and even cried with the doctor in the room. I am sure she is used to that.We started off with a life history of Ariauna including how my pregnancy was with her and went up until today with her health. Then we discussed family health issues up to both Jerry and I's grandparents, with each family member being discussed in depth. That took the first 45 minutes. Then we discussed Fanconi Anemia in every little detail. I am so grateful to be at this hospital with these doctors.  The doctors at Primary's told us a little bit about Fanconi Anemia but not in the details Dr. McMillan did today. She definitely knows her stuff and has written part of a book about Fanconi Anemia which they gave us a copy of. We discussed a lot of other cases of Fanconi Anemia that she has dealt with and she told us if we walk away only remembering one thing today, she would like it to be that we need to focus on Ariauna. She said we will be surrounded by people that are going through bone marrow transplants and families here that are going through a lot of similar things, but that we need to not focus on what has or has not happened with them, but to take one day at a time and focus on Ariauna and what she is going through. Every person is different and every single person's experience with bone marrow is different and not to focus on the good or bad of someone else's experience. We talked about our other children and what there chances of having Fanconi Anemia is. They have a 25% chance of also having it. I told Dr. McMillan that PCMC in Utah had told us that most insurance companies will fight having the test done on the other children unless there is good evidence that they may have it. Dr. McMillan said our other children will be tested and that she will fight the Insurance until it is done. She will make sure they get tested for it and soon. The good information we got out of the Fanconi Anemia portion of the appt with Dr. McMillan is:  98% of Fanconi Anemia patients have to have a bone marrow transplant at some point in their life and that Leukemia is a bone marrow cancer (stupid me, I knew Leukemia was a cancer but did not know it was specific to the bone marrow in your body). Here are some good percentages we were told and thought it is very important to share. In 1980 the survival rate of Fanconi patients having a bone marrow transplant was 25%. Out of all of the bone marrows done on Fanconi patients in 1980, 25% had graft failure and 50-70% got Graft vs. Host disease for more information on that visit www.fanconi.org. From 1980 to 1990 Dr. Margaret McMillan and Dr. John Wagner from University of Minnesota Amplatz Children's hospital studied and did trials and tests to make those percentages better. They tried lowering doses of chemotherapy on Fanconi patients, they tried to add different drugs to help them. In 1990 the change of percentages increased to 80% survival rate, and the Graft vs. Host disease dropped to only 22%.  I am grateful today for these two doctors who specialize in this disease and who have spent countless years studying to improve the outcome for FA patients. And the percentages are even better now days. So she basically told us our homework was to decide for sure where we wanted to have this transplant done and how soon we want to do it. They have completed the search for Ariauna. Dr. McMillan is not comfortable with using a live donor. The best live donor for Ariauna was only a 5 out of 6 match and if she was to use a live donor she would want it to be a perfect match for her. Unfortunately, right now there is not a perfect live donor match. We could wait and keep searching for a live donor perfect match, but because of her blood counts she is not comfortable with holding off. So they have found a cord donor match that will be perfect for Ariauna. They will be ready in approximately two weeks to do the transplant. Jerry and I had already discussed that we want to do this the sooner the better. We want to be able to have our family back together for Christmas. This is the part that gets teary for me. I know with out a shadow of a doubt that my Heavenly Father led us to this hospital and to these doctors. I know I was not happy in the beginning and I know I am so heart broken about leaving Jerry and my kids behind. But I also know that this is the answer to a million prayers that have been said in our behalf. I am confident, and feel very strong that this is where our Heavenly Father wants Ariauna to be. That these doctors are the doctors that need to be taking care of her right now. I felt a connection the minute we met Dr. McMillan and know in my heart we are doing the right thing. We told Dr. McMillan we wanted her to be the one to take care of our Angel and that we would be ready to come as soon as they could have things ready. So we will head home tomorrow and get all of our stuff together and try to get things in order at home so that we can return to Minnesota in approximately two weeks. When we get to Minnesota we will immediately put our name on the Ronald McDonald house waiting list and right now they are trying to get families into a room within a week, and they have never turned a family away for more than 2 weeks. The problem is you can not be put on the list until you get into town. So when Ariauna and I come we will be at a hotel until we can get a room at the RMH (Ronald Mcdonald House). We will spend the first two weeks doing a full work up on Ariauna (EKG and heart tests, bone marrow biopsy, ultrasound on her kidneys, liver tests, blood work, pretty much testing every major organ in her little body) to make sure they are all working right.These will all be done in the outpatient Journey Clinic and we will stay in a hotel at night at least until we get a call from the RMH. Then about a week prior to her bone marrow day we will be admitted to the hospital to start her week of chemotherapy and as soon as that is done they will start the bone marrow transplant. We spent the last part of our appt with Dr. McMillan discussing the bone marrow transplant. When, Where, how it will all happent, etc. We talked for a long time about when is the right time to do a bone marrow transplant. She said this to me and I will forever remember it...."As a parent one of the hardest things to do is to bring your child who looks and acts like they are feeling fine into a hospital knowing they are going to get very sick". As I sit here typing this post, my heart is full and tears are streaming down my face. So many people look at Ariauna and would have no idea what is going on in her little body. I agree with Dr. McMillan 100%, this is going to be the hardest thing I have ever done in my life. Here is my little girl, who has been through so much in her 8 years of life already, who has had a rougher road then most already. My little girl who even at this moment wants to be running, playing, riding her bike, having play dates, going to school, and doing as much as she can possibly fit in to one day. Here is my little girl who is so excited to go to the Carnival that is being put on in her behalf in a couple of days, here is my little girl who's smile is contagious, who has a zest for life, who even through her hard times, keeps a smile on her face. And I am about to take my happy little girl to a hospital over 600 miles away from home so that she can get what???    Very sick, yes very sick!  It breaks my heart to know what I am going to have to put her through. But the next words that Dr. McMillan said to me where....."But in order to help Ariauna, we are going to have to make her sick to make her better".  I know I have not talked to most of you about things in my heart. But several times in the last 2 months, things have happened and I have felt in my heart what the outcome was going to be. The day they told me Ariauna might have Fanconi Anemia my heart was shattered. I cried and cried for days. I prayed my heart out that my daughter did not have this horrible disease. But deep down in my heart I think I knew she did. I read on line and new she had all the symptoms. I couldn't deny it. There have been numerous other things that have happened too that I have just felt in my heart what was going to happen. So you will probably hear that a lot on my blog. Right now, I know in my heart we are going to the right place for Ariauna's treatment. As much as I wish we didn't have to go so far away from home, as much as I prayed we would not have to leave our home town, I know we are doing the right thing. Dr. McMillan also explained how she has had several parents who have brought there children in just like we did and she has told them the diagnosis and what needed to happen for the child and the parents said thank you and walked out. Their child was healthy and seemed to be doing okay so they took them home and went back to their every day life. Then years later she meets with those same families and now the child is very ill, has all sorts of infections, cancers, ect and the parents want Dr. McMillan to perform the bone marrow. Unfortunately, for some children they were too sick at that point to be able to go through bone marrow. Other's she attempted, but the child was 10 times more sick because they were not healthy to start. So we will start this next part of our Journey as soon as we get the phone call saying to come.  Here is a picture of Ariauna and her new bone marrow doctor-  Dr. Margaret McMillan.

And if you ask Ariauna what the best part of the day today was, well then she will tell you that Dr. McMillan gave her permission to pull out her feeding tube. She asked us what the reason was she still had it in since her surgery was clear back in March and I told her that they had just begun slowly working her down to just night feedings but that the doctors at PCMC had discussed maybe leaving her on until the bone marrow transplant to help keep her fattened up for the transplant. Dr. McMillan said that FA patients will never be fat and there is no point for it. When she comes to the hospital she is most likely going to lose a bunch of weight again so not to stress about it. She told Ariauna she could find a nurse to pull it out or Ari could do it herself. Ari chose to pull it out herself.

 

 

As you can see by this last picture, it did not feel very good coming out, but she did it! She pulled it out all by herself and after it was all said and done, she was the happiest little girl. Dr. McMillan said they would work on getting the donor marrow sent over and then would be in contact with us to schedule the dates. Before she left she got a prescription sent over to the hospital pharmacy for us. The prescription is an anti-fungal medication that they give to all bone marrow patients rather you have any fungal issues or not. It will kill any and all fungus that might be in her body. This is a medicine that they want patients to take for a month prior to transplant. With being home for 2 weeks and then outpatient for 2 weeks, it will work out just right. The bad part of the medicine is it makes her skin very sensitive to sun. So she is not suppose to be in the sun much at all, and if she is, she needs to sunscreen a heck of a lot more than she usually does. If you were to ask Ariauna what the worst part of our trip was, she would probably tell you it was when the doctor told her no more riding her bike. She just got a new bike for an early birthday present, but it is going to have to be put aside for awhile. Ariauna's platelets are only at about 10,000 and they say anything under 30,000 is critical. We said goodbye to Dr. McMillan at least for a few weeks. Next on our list of people to visit today was the genetic counselor. She came in and spent an hour with us. She talked to us about how Ariauna got Fanconi Anemia (a gene that I carry and a gene that Jerry carries). She talked to us about the importance on finding out what genes those are. We did a full print out of family history again, back to both sides of our grandparents again listing any and all medical issues. The gene that we carry can be from way back in our families. They drew some blood labs, of course took more blood from Ari that she doesn't have to be giving away. They will be testing Ariauan's blood for a lot of genetic stuff.

 The genetic counselor also went into a lot of detail on a couple of studies they have going on right now for Fanconi Anemia and asked us to be involved in them. All of them are just informational studies, other than maybe one or two blood tests down the road. I am more than happy to let our information be part of the study. If I can do something to help other families down the road who might face this similar situation, I am all for it. We also met several other nurses and nurse coordinators during our visit. I think I was given 15 different business cards with phone numbers and emails for all the people we may need to talk to at some point. The last person we met with was the social worker Marie, who works on Unit 4 with the bone marrow transplant kids and families. She will be the one to work directly with us on any problems, concerns, helping us get into the RMH and there to help me through those days, I just might be having a hard time. We had a good hour visit with her too and then she took us on a tour. She went over a lot of important information about hotels to start out in, the RMH,  laundry facilities, food, the rules and regulations in the bone marrow rooms, etc. She gave us a lot of important and valuable information. Then was the grand tour. She took us over to the inpatient side of the hospital. She started off showing us the library on the main floor where we can borrow books, and then we headed up to Unit 4. A lot of things we saw looked familiar, thanks to the video Tara and Amy put together for us. We met Mary in person at the front desk who welcomes everyone in to Unit 4. Then she gave us a tour of the whole unit. She showed us the laundry facilities, the refrigerator that I can use to store any food I may want/need. (I hope I can find a store that has some Ben & Jerry's All but the......ice cream. I just may need a few quarts of that to get me through!). She showed me the bathroom facilities that I will use. There is a bathroom with a shower in each of the patient rooms, but they are for the patient to use only. They do not want any cross contamination for Ariauna (since I am filled with germs :-) ). They showed us the playroom, which Ari will not really get to use, and the important closet where I can go and get movies, games, crafts, and toys to bring in to our room.

 

 Next, was the room that we will be living in for 4-6 weeks. And I mean literally, Ariauna will live in that room. She will pretty much not leave the room the whole 4-6weeks. The rooms are really nice and spacious, they are even bigger in person than the video we posted. They have a lot of storage room which is great. They have the room separated into three sections. The nurses area, the patient area and the parent area. The one side of the room is a floor to ceiling window. Ariauna thinks it is cool because it has electric blinds that go up and down and the have a shade one and a dark room one. They also have the lights in the room that she can change depending on her mood. They have a big screen t.v. right in front of her bed that has the "Get Well Station" which is a station with cartoons, movies, games, ect. She can get on the Internet from her bed on the t.v. and there is a wireless keyboard that she can use in bed.

 

 

I really was pleased about the hospital and the rooms, the staff, the nurses and doctor. I can not say enough about them. We definitely have no worries that they won't take care of Ariauna just as well as Primary's did. I think we are going to be in good hands. We'll 1/2 way through our appointment while I was signing some papers for the studies, Jerry took Ariauna down to make some mac and cheese in the pantry. However, Jerry and I had not eaten since 9:00 a.m. so we stopped by the cafeteria for lunch/dinner. Then we headed out. We went back to the hotel and called and visited with the kids and grandma and grandpa at home. Filled them in on our visit to the hospital. We put Ariauna's new fungal medicine in the fridge and headed out again. We were off to see the RMH. When we got there we called and they came and let us in and took us on a tour. We were amazed. I should have taken more pictures, but I didn't. I think you will all find this interesting. At least Jerry and I did. I think we have all told you how rare Fanconi Anemia is right?  We'll just so you know and understand how many patients have been seen at the University of MN Amplatz Children's Hospital. We walked in to the RMH and Katie who took us on the tour asked us why were coming to stay. I told her that Ariauna was needing a bone marrow transplant. She looked at me and said, does she have Fanconi Anemia?  I was blown away. How in the world did she know that? I had not said anything at all about that. I asked her how she knew and she said she just has the Fanconi Anemia look. I said what do you mean. And she said she has specific facial features. I said, like what. She said her eyes. I was blown away. Then she felt bad and said she hoped she had not offended me. I told her I was not offended, just blown away that she knew that. She said Fanconi Anemia patients have specific facial features like a child that has down syndrome. WOW.... I had no idea, I have never seen anyone else with Fanconi so I wouldn't know, but I guess she has seen several kids with it and knows they all have the same feature. (Now I am thinking I should bring pictures of the rest of the kids and see if they have those same features). Interesting, uh?

 They showed us everything in the building, the movie theatre, the arcade rooms, the school class room, the scrapbook room (I know can you believe it), the full size gymnasium in the basement, the living rooms that have a whole wall of shelves packed with movies and several of the same movie, the playrooms (including the huge princess castle in the one room),

 the outdoor play areas and BBQ areas, the kitchen areas, and we even got a sneak peek of a room that someone had just moved out of. They said most likely when we first get a room there, it will be a small room (which still has two queen size beds) and then we will be on the list for a large room as soon as one becomes available. We actually saw one of the large rooms. When you first walk in there is a small area with a table to eat, a couch (that pulls out as a bed) and a t.v.. Then there is a room behind that has a set of bunk beds and the two queen size beds. So the large rooms will sleep 8 which will be very nice if and when we can get the kids out to visit us. I was amazed at the generosity of people back there. I have never been to the RMH here in Salt Lake, but the one back there is supposedly the largest one in the U.S. and it is completely full 95% of the time. When we first walked in and she took us through the kitchen areas, there was free food everywhere. There was probably 40 boxes of every flavor of girl scout cookies on the counter that were donated from troops there, there was rubbermaid containers full of cereal, baskets with oatmeal, muffins, candy, snack pack crackers, I was blown away. She showed me how we would be assigned a large cupboard with our room number on it that I could store any food I bought in it. She explained how every night of the week dinner is provided, cooked and prepared by a local business and is free to the families staying there. There is one large cooking area for them to use with tables and chairs all around it.

 

Then on the outside edges of the large kitchen area, there are 6 other small kitchens with stoves and pots and pans that you can use to cook whatever you need. That will be great for when I need to bake a birthday cake in August! She showed us the board that shows the menu for the week provided by the local business', the activities that are scheduled for the week (during the summer they take about 3 field trips for siblings and or kids who can go out and about), and the sign up sheet for the Super Target run. The RMH has a shuttle that runs to Super Target twice a week for an hour and a half so you can sign up to take the shuttle and go get your groceries, etc. (Not sure yet, what I will do with Ariauna as she can not be left there alone, and she can not go out with me). I was told they have a volunteer service that they can assign a specific volunteer to me that will be with us through our whole journey there that could come in and watch her for a bit if I needed to run to get supplies. They also have a shuttle that runs back and forth to the hospital every half hour from 7 a.m. to 10:00 p.m. so that will be nice. I really do not want to drive around that place. It was scary enough with Jerry driving, let alone me. We saw a few families and talked to them about all the different places people come from to stay there. Right now they have a family from England and Saudi Arabia staying there. Jerry said if the kids come to visit, they will never want to leave. I wish so bad we could all go as a family. Unfortunately, there are bills that need to be paid at home. I wish I could just pay someone to come stay with my other kids so they could just live at the RMH and I could see them whenever I wanted. We left the RMH feeling overwhelmed at the generosity of everyone who donates to them to help families like us. We left having a good feeling inside that we will be taken care of there, and that it will be a good place to call home for awhile.

We left the RMH and headed for the Days Inn which is a hotel closer to the hospital that does offer a shuttle the same hours as the RMH. We talked with them about the rooms there and the chances of getting in for awhile. We are a bit nervous, if we head out in two weeks like the doctor is thinking, there is a huge conference going on at the University and most of the hotels are fully booked so not exactly sure what we will do. Yikes!  Well by this time it was late and we headed back to our hotel. I stayed up to work some more and get the rest of my calls typed up and uploaded to the company. Ariauna stayed up and watched the Disney station and Jerry hit the pillow and was out. When Ariauna and I finally laid down in bed to go to sleep we had a mother/daughter heart to heart talk. We discussed if she is nervous. She told me she was a little. I asked her what she is the most nervous about and she said how much she is going to miss Jack Jack. She loves him so much! The next thing she is the most worried about is losing her hair and then she started to cry and said she is worried that Austin and Sadie will tease her and then she cried and cried and said she is worried that when Jaxon sees her with no hair that he won't come to her. We both shed a few tears and she then said "Mom, I am worried about what my friends will say when they see me with no hair. If they will laugh at me or make fun of me". My heart just melted. I am so worried about her, worried about her feelings, how she is going to handle this. I am worried about how she will react when she sees herself in the mirror the first time with no hair. But on her little mind, she is worried about what other's will think and say to her.  I hope and pray that no one will make fun of her. In my eyes, she is beautiful inside and out. I hope and pray that everyone who sees her with no hair will remember what a beautiful little girl she is with or without hair. Ariauna cried and then dozed off to sleep.  I have not slept well since. I have been up until 2 a.m. most nights since, when I do try to go to sleep I have anxiety about what is ahead of us. I have been on the verge of tears since the appt. I am an emotional wreck. I have so much to do, and not much time to do it all.  I am looking forward to having one on one time with my beautiful little angel again. Life is so crazy at home, and there are so many things and other babies, that need me and my time. I think the only thing I am looking forward to during this trip is the one on one time I will have with my beautiful little baby! I love her with all of my heart. I wish the circumstances were different, I wish I could take this disease away from her and make her better, I wish I could promise her that she will be okay, I wish I could promise her that people will be kind and caring about her beautiful bald little head. But I can't....So for now, we will continue to prepare for the biggest nightmare of my life. We will try to get up the strength and the courage we need to leave our family, friends, and support system at home and go start this journey. We love you all and continue to thank our Heavenly Father each and everyday for having you all in our lives. May God bless you for all you do.