Thursday, February 24, 2011

Day 13 : A Time For Transitions

Ok, I know I missed a few days posting....I apologize. It is not easy to find time to get on the computer when it is the G-man and I one on one all day. He keeps me busy and creative coming up with new ways to keep him entertained. We blew up hospital gloves one night, we have put toys in socks, used the thermometer case on our fingers as puppets. You name it, we have done it.

He is really doing well. I am so, so proud of him and how strong he is physically and mentally to not be fussy being stuck in a room and bed. They expect in these first two weeks following the chemotherapy and transplant for his body to go into Neutropenia. That is when there is an abnormally low number of white blood cells which makes the risk of infection great. So far, his counts are staying strong. They had a slight drop but then they went back up slightly. They really seem a little surprised to the point that they rechecked all of this Chemotherapy levels from when they were administered and the blood draws afterwards. All were at the expected dose levels and a couple of the draws afterwards indicated levels at the top threshold. So...he is Superman I guess. I know his levels are probably going to drop this week and Superman will be at risk but for now...he is still strong and healthy. Ha..see, a couple of hours after I typed this they came in tonight and said they are going down. His Hemoglobin is also sitting at 9 and they will transfuse at 8 so that will probably be this weekend. He will make it through this. He has proven himself to be strong. We will also know his cell activity next Friday. That is a HUGE day to me. I am very anxious already.

Transition #1 is that they moved us to the new ward we have been hearing about since we came here. I almost wish they would not have talked so much about it because I got this picture in my head based on all the hype that it could not possibly live up to. We were told multiple days we would move but Tuesday was the day. Brad was here to drop off some clothes for Giovanni so he stayed to help move our things over. The new ward is painted in orange and blue paint which definitely is warmer feeling than the white walled halls. The doors are all automatic and the entire ward is air sealed to keep the patience safe from outside germs. You have to wait for the air compression to reach the right level before the doors will open, reseal and air compress again. We get to our room and wow.....it is way smaller than the room we were in and there is only one window....I miss my 4 big windows since I crave natural light for my sanity. Not only is the window small but it has blinds on the inside and you can't raise them, only turn them up or down. My mind is spinning with anxiety and complaining and I feel bad about that but this is where I am going to be living for the next 5 weeks. We were basically just dumped in the room with the malfunctioning beeping door and left. It.would.not.stop.beeping. (and wouldn't you know it, as I type this the door started randomly beeping again. A nice, solid, high pitched beeping while Giovanni sleeps) It was driving me insane. There was no refrigerator like in the other room and they seemed surprised about that, there is a big changing table in the bathroom that semi blocks the door to get into the room, there was no high chair like I was promised, no trashcans and no diapers for him which they told me they were out of his size and I would have to wait until the next day (Brad made a special trip with a package for him). On the positives...it is warmer feeling like the entire ward, the TV is nicer (even though I just put it on the music channel for noise) and feels cozier. The nursing staff and doctors seem annoyed by the rooms a bit and our door is broken and does not open by itself as they should. I really feel bad complaining but this is where I have to stay, 24 hours a day with Giovanni (accept for a few hours every other day when I go home to see the kids). My ongoing joke (yes, I find myself funny) is that I have yet to find the bartender over here at the new ward and when I do I hope he has my drink made.

The kids like the new flat. It gives them much more space and feels more like a home than a hotel like were before. They miss their brother so much and it will really feel like a home when we are all back together as a family. There are 3 parks in walking distance and a canal to walk along as well as little town shops to wander by. It will be nice when G and I are back home and we can explore a bit more all together. I am all about learning what we can about the area we are living. There are several other families here for the hospital living in the Vimodrone area where we are. They do transplants for multiple other diseases so it is just the two MLD families and then another family from Turkey whose son has a different genetic disorder. One of the nurses commented to us that we are the first family from the US to come here that all of the families have been from the Middle East. I thought that was interesting that they all come from the Middle East.

We are in an area of the ward with just two rooms that are behind one of the sealed doors with our own sealed doors. The other family whose child is the #3 gene therapy patinet is next to us. I mentioned them before...they are from Egypt. The mother and I have waved to each other in the rooms and today when she was leaving she stepped in front of our door (the doors are glass) and waved, motioned towards Giovanni and gave a thumbs up? I acknowledged that yes, he was doing well and then asked her the same about her son who finished his chemotherapy today. She gave a thumbs up too. It was a nice exchange between mothers who know what the other is going through. I want to find out if she has a computer over there and we can e-mail each other and translate them into our own language when we receive them. It is as if we have a bond through the wall. She is experiencing the same fears and excited hopefulness that we are.

Our other, less exciting and very stressful transition is that our babysitter Tarah, who lived with us in Omaha, has let us know that she really misses Omaha and wants to go home. This is devastating news to us and frankly, to the doctors too. They have let her know that she cannot leave until we find someone to replace her which will not be an overnight task. We know a lot of wonderful people but they all have children of their own and cannot come here for an extended stay like that. I am most upset for the children. They need stability now more than ever with Giovanni and I gone and she provided that for them. They will now have to meet a new person and go through that tough transition all over again. I worry that they will be left wondering if they did something wrong since they think of her as part of the family and she would be leaving us. Giovanni is very attached to Tarah and he gets very excited when he comes to visit her at the hospital. It makes me very sad that he will not see her anymore. It is all very tough but we will get through it. We have gotten through so much already together.

My head is pounding. This has become a nightly thing the last few nights. Giovanni is snuggled in bed and I am going to join him.

I will try to be better with updates. I realize they don't have to be novels and the more often I post the shorter they can be.

I appreciate you all. We have several friends working on fundraisers. I will be sharing the information with details very soon. We are so blessed to have the people in our lives that we do. We could not get through all of this without you.

Hug Your Babies!

Amy

Saturday, February 19, 2011

Day 8 of Treatment: Completed Transplant and Emotions

We had a successful transplant last night at 7pm with a room full of doctors and nurses. Giovanni is very popular around here. Earlier in the day they told me they would give him something to keep him calm since he had to lay still for a while but when we were ready to begin Dr. B told me that I needed to keep him calm and not moving around for 15 minutes. Uhhhhh.....is that even possible with this kid? I was a bit stressed but took on the task and entertained him like a clown for 15 minutes while the cells were slowly infused back into his system. He did awesome and the transplant was completed successfully. I took a huge breath when it all was over. We will know in 2 weeks how many cells and the activity of the cells in his system. That is also the time that his platelets, white blood cells and red blood cells will be at their lowest point and the most dangerous time for potential infections and bleeding. Pray for active ARSA enzymes in the cells, a good transfer and a good quantity for Giovanni for longterm enzyme activity. Also pray of his health in coming weeks. The healthier we can keep him the better his chances of getting out by the 45 days (that is the average expected stay). I am shooting for less :) so we can be back together as a family.

I woke up in a myriad of emotions today. I am so overwhelmingly thrilled to wake up next to this sweet, smiling boy with this sing-song noises and sweet face. I really can't believe how well he is handling 3 noisy, foreign language speaking nurses coming in at 6:45am and waking him up. I had a dream overnight with Liviana walking, running and playing like she used to. I have been a mess of tears and emotions this morning over Liviana. The reality of treatment for one child that another can't have has always been in my mind but this morning it has been harder to process. I get lost in the daydreams remembering Liviana as she was prior to November 17th when she stopped walking. I remember when she used to go to the door where Aria and Miles were playing without her and shout, "Daddy's Home" so they would leave the room to go await daddy at the door and she would sit down and play with their toys. Of course, Daddy wasn't home but she knew that would get them out of the room. I remember when I would start getting a bath ready she would run to them and say, "Guys, Bath..."Guys, Bath", running back and forth with excitement. I remember she was always under my feet in the kitchen and I was constantly backing into her. I would also be standing at the counter and feel her little arms wrapping around my leg and look down and see that amazing face looking up at me. I remember her helping me with Giovanni's diaper changes and wanting to help me dress him. It is all to much to sit and think about and that is why I often don't. If I had spent these last 2 months focused on all of these times I would seriously be a basket case right now. God...how I MISS Liviana so much. I don't mean that to sound like she is not here anymore but I miss seeing her live freely. She still lights up a room and brings me tremendous joy but it is hard to not miss those moments from the past. Why did I have to face the fear of losing her at birth, see her fight and succeed against her CDH only to have this happen to her? It seems so cruel and unfair to me. She doesn't deserve this. Why could she not have been diagnosed with the MLD before she was showing symptoms so she could get this treatment. How amazing would that have been for her? Damn, damn, damn....I must stop with the dwelling on the past. It isn't healthy and I need to be able to focus on Giovanni while I am here with him at the hospital.

I am going to head home to be with the kids and Brad today. Tarah will come join Giovanni again for a few hours. I do not know who gets more excited about that, G or Tarah. Liviana really LOVES when I put her in the sling so I am planning on carrying her in the sling most of the time I am home this afternoon. It makes her SO happy and she just melts into me with comfort. I don't see that comfort in her most of the time so it is good to know she gets so much physically and emotionally out of me carrying her in the sling. My sweet, sweet, Liviana. Why, why, why?

Thank you all for continuing to follow our journey here in Milan. It is difficult to go through this process with our children and even more difficult to do it so far away from home in a foreign country. I can't tell you all how much you mean to us.

Don't take for granted a single moment with your children!

Hug Your Babies!

Amy

Friday, February 18, 2011

Day 6 of Treatment : BIG DAY

Today is the day! Giovanni has finished chemotherapy and will have his cells transplanted back into him with the corrected ARSA enzyme around 7pm (12pm CDT). He has had many people stopping in to see him on his big day asking him if he is "ready for his cells". He has no idea what is going on but I am sure when the room is full tonight (Which it will be) that he will be hamming it up like he always does without a care in the world accept why he can't go walking around and why he can't have chocolate.

I am very anxious with anticipation. That anxiousness is combined with anxiousness over missing my other kids, the life in "the box" and missing being a family. I had a chance to head home for a visit for a few hours last night. It was the first time I left the hospital since Sunday when we arrived and the first time I left the room since Monday. It was a really strange feeling arriving at the new flat. I felt like a visitor, I didn't know where anything was, I didn't have enough time to just relax as the kids and I played hide and seek and then I had to get things gathered up to take back and then try to get Livi to bed (she wasn't having it). Aria sat in the corner of the kitchen and started crying saying she didn't want me to leave and that she missed Giovanni too. It was heart wrenching. I don't think in her 6 years she has ever cried over something like that...missing someone, emotional pain. It was really hard to see and even harder that I could not do anything to make it all go away. This process scares me so much for what it is doing to and for Giovanni but also what it is doing to our family. I feel it pulling us apart but I suspect that I have that impression more since I am the one on the outside. The flat is so nice and I want anything for his treatment to be over and for Giovanni and I to be there with everyone else.

Gosh...I did not mean for the post to take that turn. It was supposed to be a celebration. We learned some lessons last night with my visit home. It was my first time riding the subway and electric train. When I headed back I found out that the subway does not go into the hospital late at night so I would have to take a bus part of the way. When Tarah left she was unable to find a bus and ended up being taken home by our new friend, Marcus. He and his wife Lisa have been amazing to us since we met them last week. They know what it is like to travel to foreign countries with children and they had things to get rid of since they will be leaving Italy in the summer and heading for Angola. It helped fill some gaps in our needs at the new apartment.

My G man is now napping. He looks very different. His eyes look sunken with dark circles underneath. His skin is more pale. I am with him all the time so I do not see the change as much until I look on photos I have taken since we have been here. It is very startling. He is still Bellissimo of course but he has definitely changed. He still has his hair...his mullet or skullet. He has the same hair growth pattern as Aria (and the same light hair color) where most of his hair has grown on the back of his head with much lighter growth on top. I do not know if he will lose his hair (the first family through treatment told us their son did). He has worked a whole year to grow the little amount he has so let's hope it stays put. It even looks like it will maybe be curly too...a curly headed, blonde haired, blue eyed boy :).

Many people have asked about sending things for us and the kids. I LOVE that you all are so kind and thinking of us but the mail receipt system here leaves something to be desired. My friend Kelly mailed me some vitamins for the kids, shampoo and conditioner for me and some hair oil for Livi's curls. She sent it on January 25th and we still don't have it as it is currently being held at the post office awaiting the 3 page affidavit that I had to complete with Miriam. They identified the products as "healthcare" and want to make sure I will not sell it. Really, if I was going to sell it I would probably have more sent to me than one of each item, don't you think? They also tax our packages and we will likely pay $30-$50 to get the box (I can't figure out their tax system). We had to pay $160 on the computer that arrived a few weeks ago so who knows. My worry is that we won't get things quickly enough for the kids to have them while we are here. The UPS was quick but obviously more expensive. If you do send something do tracking on the package. Aria's class mailed her Valentine's at the beginning of February and I am hoping they will arrive. It would make her day. So...if you want to brave the Italian postal service our new address is:
Sig. Price
Via Cairoli, 60
Vimodrone, Milano Italy 20090

I think I may doze off for a bit while we await lunch to arrive. I will update tomorrow on how the cell infusion went. At noon CDT be thinking of Giovanni and praying that this is the miracle he needs to live a long life.

Hug Your Babies!

Amy

Wednesday, February 16, 2011

Treatment Day 4

I am finally back among the wired and I apologize for being late updating. Internet connections are harder to come by around here compared to the states. I actually got connected last night around 8pm but honestly didn't have the energy to update once I got Giovanni to sleep. Something told me to get rest because it would be a long night, which it was.

We entered the hospital on Sunday at 3pm. We were told we were starting in the old ward and would move to the new ward sometime this week. The room isn't as bad as I was expecting. It has two large windows which is all I need to feel a little sanity. There is also an exercise bike...I haven't had the time for a workout yet though. Giovanni was immediately started on some medications and a breathing treatment to prepare him for the chemotherapy that would start the next evening. He also had to endure having a needle finally put into the box in his chest from his first surgery. Bless his sweet little heart. It isn't a thin little needle and even with the local anesthesia cream they put on him it was painful. That has ended up being the first of 4 catheter procedures since he was admitted.

That evening they brought my dinner but nothing for Giovanni. I found this odd so I asked our nurse, who spoke fairly decent English. He said it would be later. Later...still nothing so I asked Laura, one of our doctors...she said it would be later...still nothing later again. Giovanni was not supposed to have any food after 8am and I wanted to make sure he had a good dinner since I know a breakfast is hard to come by in here. Finally, I called our nurse, "Mas" in and said it was about his bedtime and I needed to know if his dinner was coming soon. He said he would be back and came back 20 minutes later with a bottle of formula/meal replacement-ish thing. What the heck is that? He asked me if I had a bottle top for it? Ha...no! He eats real food and he NEEDS real food. This is a strapping, 13 month, 25lb. boy who eats pasta, pizza, steak, ham...you name it, he eats it. He also feeds himself with a fork and spoon. A bottle of stuff isn't going to work. He came back a few minutes later with the doctor on for the night and had a jar of baby food. Again, what the heck? He has never had baby food and if he had he is 13 months old now and needs real food. They apologized and said that it was too late to get any other meal for him, would it be ok for tonight. So, I fed him some pureed stuff. It wasn't even thick consistency like the higher numbered baby food jars at home...it was like thick broth. He was starving though so he ate it. He nursed like a mad man all night long and when morning came I asked at 7am for his meal (since the night before they assured me the food issue was taken care of and they have breakfast, lunch and dinner here) and I was told he could not have any despite it being an hour from his food cut off. I had some crackers and other things In my bag and fed him what I could. The language barrier is really quite the challenge. That afternoon as we waited for his surgery time, at 2pm, to approach he was beginning to scream like a starving lunatic. He was so, so hungry and I continued to nurse him until noon (and once around 1pm because he was hysterical) but he wanted a meal. I also at this time was starving because they didn't bring my meal for lunch. I can't leave the room so I am not sure how they thought I would eat for the day and the shredded carrots with cheese they gave me the night before somehow wasn't sustaining me.

I took him down to surgery and stayed with him until he was anesthetized. He looks like such an angel and so tiny on the big, adult sized table. They harvested more stem cells, performed a skin biopsy on his arm and a spinal tap. These are the cells that will are currently in the lab having the ARSA enzyme correction made for his reinfusion on Friday...these cells are the potential life savers for our sweet boy. He came back from surgery angry (likely still hungry), puffy and tired. I nursed him and he settled a bit and slept for a while. He was to begin his chemotherapy in a few hours. I have felt so anxious about this entire treatment, as I have expressed. It had gotten to the point that I had been so anxious waiting that I just wanted them to get it over with at this point so I could tackle the experience head on rather than living in the horror of it all in my mind. He needed a decent sized blood transfusion so that was done first through an IV in his foot that was placed during surgery. They would be taking Bulsafun (the chemotherapy) every measurements in the blood after each administration to make sure levels were where they were supposed to be. It could not be done from the same port as the administration obviously so the extra IV was needed. He was also on continous monitoring for heart rate and respiration. This machine was on the opposite side as the blood and chemo and I was holding him in the middle on the bed, trapped under a bunch of wires. I had to be "freed" by Brad and Mas :).

So...finally, the chemotherapy started. By this time he was up playing and laughing, walking about in his bed. It was a great sign. They give him an anti-nausea medication and he didn't seem to have any issues at all. As with everything, he was taking the Bulsafun like a champ. Dinner arrives ***sigh***...his meal is all pureed food. W...T...H? I had a conversation during the day with the nurses about his diet AGAIN before he went into surgery. I had, by that afternoon described, no less than 3 times what he eats and gave examples when asked. I didn't know how else to say, HE EATS NORMAL FOOD LIKE YOU OR I other than saying just that. I gave him some of my food and yogurt we bought (I am OD'ing him on yogurt for the probiotic benefits). It kept him happy. I ordered the meals for Tuesday off of the sheet so I know he was going to receive a proper meal for lunch and dinner the next day. Brad headed home (Which by the way was still the hotel...they moved moving day...again...to today). Giovanni had a busy room overnight but overall slept well and didn't seem to have any issues from chemo at that point.

The morning of Day 3 in the hospital arrives with my "breakfast"...none for him, so I shared and gave him more yogurt. I use the term breakfast lightly....it is some graham cracker like crackers, some toast like crackers and some jelly and honey. It will do, especially given I don't get much activity while in the room. He is still doing really well with the chemotherapy. I am so, so relieved. The day is fairly uneventful. Daddy vists for a while and we had lunch. He was happy to eat real food and everyone who came in the room seemed so surprised to see him sitting there happily eating pasta, fish, some zucchini and pear sauce. I guess at 13 months old he would be eating out of a jar around here. By lunch time I am seeing a different looking Giovanni. His skin tone is pale, he has darkish-red circles under his eyes. Now he looks like he is having Chemotherapy. After lunch he takes a 3 hour nap while I piddle around the room picking up, organizing our stuff and playing Angry Birds on my phone (Thank you, thank you to the creator of Angry Birds). I finally decided to wake him up because he never sleeps that long. Around 4pm the new nurse came in (I have yet to figure out shift changes since they vary and they don't tell you they are coming or going until someone new comes in) and asked if he had been screaming a lot. I said "No" and she said that was a common side effect of the anti-seizure medication he was on. No more than 30 minutes later the screaming started. One of our poor doctors, Laura sat with him the few minutes I was out in the hall talking to Dr. Biffi because she can't be near the chemo since she is pregnant. I could hear Giovanni screaming the entire time. He was in absolute hysterics. It broke my heart. He promptly fell asleep, woke to eat and then passed out for the night. The night was ROUGH. Reader's Digest Version is multiple attempts to replace blown IV from foot in both arms...both times failed. That lasted from about 1am to 3am. At 4:30am they had to replace the port on the chest catheter. That lasted about 45 minutes. The cries are so painful to hear.

Today was a good day. His mood was much better. I spend the entire day entertaining him in the space of his bed or in the chair next to his bed. It truly feels more exhausting than taking care of 4 kids. He has a line running from his chest catheter that splits off to two different machines. One of my jobs is to make sure he doesn't pull that out. I can only compare it to the Bull in the China Shop. I have to keep the giant bull from breaking the china and it is an exhausting task. I feel like a crazy anxious person chasing lines while still trying to play with him and keep him happy. I really am so proud of how he is doing. He is so strong and while I know that the next few weeks may be rough as his counts dip and he receives the infusion of new cells I can tell he is so strong and not about to stay down.

It is after 9pm here and I am so tired from last night. I also am feeling quite a bit of sadness as Brad, the kids and Tarah were finally able to move today. I called a few times to see how it was going and the kids sounded SO happy. I wish Giovanni and I could be there with them. Brad said Aria has had a hard time with Giovanni being gone. She misses me too but that is a different missing than her baby brother she adores. She knows the seriousness of all that is going on and I know that weighs much heavier on her than a 6 year old should ever take on. It was nice to hear such joy in her voice. I hate not being with Liviana. Each day is so precious with the kids but her in particular. I saw her go from walking to not walking in one day and I am terrified of something dramatic happening again and me not being there. I talk to her on the phone and her voice is pure heaven to hear...so sweet and soft.

I have not been home, or left this room accept for the 20 minutes after I took G down to surgery since Sunday...tomorrow is Thursday. I am growing weary of the "box" as the father of the first patient to undergo the gene therapy from Lebanon calls it (more on them in upcoming posts). That is scary since I have a loooong way to go. It has been raining here for 3 straight days...our punishment for all of the, "It feels like Spring here" posts. That adds to the feeling of confinement...that and the fact that all the TV channels are in Italian so I keep it on the MTV, all music channel and hear the SAME songs 10 times a day. I think I will escape for a bit tomorrow evening after chemo is complete to see the kids and let Brad or Tarah relieve me. I know Tarah misses G terribly too. Brad is nursing a broken foot. A combination of swelling that happened over the past couple of weeks because of his blown out shoes and a bad step last night. As usual, one of the nurses on our therapy gave him some random pills to take. She wanted to take him to xray but he knew he had to move today. He moved through it all with the swelling and pain :(.

I have much more to say but I feel like Giovanni is like a newborn...sleep when he sleeps....otherwise I am the walking dead.

Thank you for all of the continued support on the scary and hopeful road.

Hug Your Babies!

Amy

Saturday, February 12, 2011

Reality Sets In

I want to run, with Giovanni wrapped in my arms...far, far away from all of this. This week was hard on him and us. It is very hard to see him upset, getting blood draws, hearing tests, eye tests, eye exams, more blood draws, nerve conduction tests, etc, and yet still knowing the worst was yet to come. He passed all of the tests with flying colors and they commented that, "He is very smart for his age, it is very impressive". Honestly, it is little consulation. We knew that he wasn't behind on any milestones, his motor skills are great, he is cogntively fabulous...so was Liviana at the same age though. The decline came after the age of 2 years. That gives Giovanni an estimated year before the same happens to him. It is horrific to even think about as I look at this simply adorable, rambunctious, active boy.

Following his last tests on Friday, Brad and I had to go through a training on the transplant ward. I felt sick to my stomach as she described the timeline of his treatment, when his chemotherapy would start, what side effects he may experience, the fact that we will be in full masks, hats and gowns at all times...for 45 days. That doesn't bother me for myself, but rather for Giovanni. He will be nurtured by masked, gowned mom and dad. It seems so distant and impersonal which is not the way we live our lives obviously. I find myself obsessing over how this is all psychologicially impacting him. His demeanor changes when we arrive at the hospital. He withdraws a bit, waiting to see what will be done to him. It breaks my heart to the core.

I almost lost it emotionally during the training when I was told I could not nurse him anymore. Both Brad and I thought we misunderstood her and I asked for clairification, "Yes, you will have to stop nursing him". WTH? Ummmm, NO, I will not. I of course put together words better than that and said that it basically was not an option for him or me. Not only does he get important nourishment from it (yes, even at the age of 1) but it provides him important comfort that he absolutely is going to need at this traumatic time in his life. How could I traumatizse him with forcibly weaning him at the same time he is beginning treatments that he doesn't for a minute understand why they are happening to him? As I type it, the thought of it makes me sick to my stomach. I asked that the Doctor be called and the issue be discussed. In the end I was phoned last night and they said that I could continue to nurse him, we would have to be aware of potential illness in me though so we can keep him well...ignorning that me nursing him if I am ill is the best way to keep him healthy. They said the concern is potential bacteria on my skin that is normally not a concern but may be with his lowered immune system. I honestly think it has more to do with the lack of control they have on the nursing....the quantity, the content, etc. The same issue comes up in NICU's when they make mothers pump and use bottle so they can see exactly how much is going in. Luckily, this was never an issue with Liviana was in the NICU. They used the diapers to guide their knowledge on how much she was getting. They apparently faced a mother who refused to stop nursing with one of their other gene therapy transplants. They told me that they had meetings with her and she continued to nurse her son. I could hug her for setting the stage for me and for mother's after me. To refuse a child that noursishment and nurturing at this time is counterintuitive.

The timeline for now is that today, is our Valentines Day with the kids since Monday is surgery day. Giovanni will be admitted to the hospital transplant ward at 3pm on Sunday, the 13th. He will have surgery at 2pm on Monday, February 14th to collect additional cells for the treatment, he will also have a small skin biopsy and a spinal tap. At 6pm that night he will begin his first chemotherapy dose. It is so hard for me to face. Here I had him at home, have kept him mostly in a natural home, with little to no chemicals surrounding him, natural and/or organic foods and now he is going to have chemotherapy. I know the process is horrific for any parent to face with their child but I think some of my issues with chemicals, our bodies and toxins makes me a little extra anxious about the whole process. His chemotherapy will be administered every 4 hours through Thurday the 17th. The new cells with the corrected ARSA enzyme will be infused into him on Friday at 7pm. That is when we will be correcting what it is that would eventually kill him. God, please let this work, please let this work. Please let us keep him healthy and happy for a lifetime...a normal lifetime.

His toys must be plastic (his favorite toys are wood of course), we must have a set of clothes for only the room for ourselves, we cannot be there together so Brad I will only see each other in gowns, in passing for at least 45 days. The kids can't see him at all (that is a change from what we previously were told and I will be disucssing it with them more), his clothes have to be washed and bagged seperately i in special cleaner in outfit sets. He can't have paper or crayons and we should avoid paper in the room also. Life as we know it is not only changed for this hospitalization but changed forever. His life is changed forever.
Brad and I sat after the training and I cried. I talked to him about how I was screaming in my own head, "let's not do this, let's not do this to him". We both know that if we don't take the chance to save his life it will be letting not only him down but Liviana, Aria and Miles. We would always wonder and it would surely consume us. It already is all consuming to know that we could have gotten help for Liviana if doctors would have listened when we originally contacted them.



Since things can't be easy, we are also scheduled to move on Monday, the day he has his surgery. I HATE that I won't be with the kids to move and help get them settled, I HATE that Giovanni won't even know we moved and know the new place until he comes home in a month in a half or so. I HATE the instability of it all. I want the kids to be happy and not feel the same instability and I thank Tarah and Brad for helping them with all of that since I will not be around as much. How the heck will we manage this all? Rhetorical of course.

Today we will try to be normal and play with Giovanni and discuss how this all will work and change us. Tomorrow we will meet some new friends to feed the ducks and play at the park. We saw her yesterday, with her Whole Foods bag...a dead give away...and one of her adorable blond haired daughters. She is from Canada and they have lived here for a year for her husband's work and are quite near by to where we live now. We are excited to have someone to talk to who doesn't think we are freezing our children by not having them in full winter gear in 56 degree weather :).

Finances are slim...very slim. We get reimbursed for some things but have to wait for that to all go through each time. The expenses beyond what we get reimbursed for are numerous. The exchange rate stinks for us here and we don't get reimbursed at our dollar but rather at the euro. It is a massive financial challenge to try to save a child. How sad is that? There should be funds out there for any parent to get life-saving treatment for children without worry for lost income. It is currently not an option for both of us not to be here. They require both parents to be here during the hosptialization since one of us must be in the room 24 hours a day. We had the painful discussion about whether Brad should go back after G is out of the hosptial and on outpatient treatment. It would rip his heart out to be away from Giovanni at such a crucial time in this journey and of course, to be away from the other kids and Liviana when she is still with us enough mentally. It all is cause for pause, and stress and trying to figure out what to do.

Many have asked for our address and we will have our own now...and hopefully things will make it to us. It will be:
Sig. Price
Via Cairoli, 60
Vimodrone, Milano, Italy 20090

The kids would love packages from home being so far away from what they know.

We have a Valentines Day to begin. Thank you all for your continued support. I will be able to have the computer in the room with Giovanni so you will here from me more regularly. I plan to start numbering the posts with what day he is into his treatment.

Hug Your Babies!

Amy

Monday, February 7, 2011

Apprehension, Transition and Photos

It is Monday and this week already had me feeling apprehensive and anxious. Today was just the start and I am labeling Sunday, the 13th, as "D" Day. That is the day Giovanni will be admitted to the hospital and remain there for approximately 45 days (depending on his condition). *Sigh*...Breathe In, Breathe Out.

Today was a series of appointments that started at 9:30am. We got home around 5pm. All of the tests being done this week are so they have a baseline pre-treatment. We started the morning with an abdominal ultrasound. He was not a fan. Following that, he had his dressing changed from his last surgery and they used a scalpel to remove the stitches. REALLY not a fan of that either. It truly made me sick to my stomach to see the look on his face. It was a questioning fear type of look....a, "Mommy, why" kind of look. It adds to the emotions I have about all of this. It is very hard.

We then were instructed that he had to stay away awake and have a full belly prior to his 2pm EEG. That gave us a couple of hours so we walked over to look at the little "zoo" at the hospital and then to eat lunch. He was SO tired. He woke up this morning at 6:30am and had only napped about 15 minutes on the walk over to the hospital. I hated keeping him awake but he enjoyed the time walking around on the hospital grounds (a pavillion area where everyone sits), watching the pigeons and trying to feed them (trying because he preferred to keep the crackers for himself. He fell asleep VERY quickly in the MRI as soon as I started feeding him but I had to wake him up after about 45 minutes so they could complete the last part of the test. He wasn't happy again. As soon as we left to head to his final two tests of the day he fell asleep in my arms again. We made our way through the hospital halls with Laura. It was an absolute maze. I had no idea on the property where we were since we were underground and had seemingly walked a couple of blocks. It is these moments that I have that, "What the hell am I doing here" feeling. It all happened so fast and here we find ourselves in Italy walking the halls of a hospital taking our sweet boy to tests after tests.

He had a very short dental examination followed by a echocardiogram. He of course, passed all tests with flying colors.

The week holds many more. Tomorrow morning we take him bright and early for an MRI. They use full sedation which I hate but it has to be better than with Liviana when she woke up half way through and started screaming. He then has psychological evaluations, motor skill evaluations, nerve conduction tests and I forget what else this week. Wednesday Liviana will have another Physical Therapy appointment. I really adore her Physical Therapist. She is a sweet, compassionate woman who has so much affection and caring for Liviana and Giovanni.

In the middle of it all we were "supposed" to origially move on Monday and it changed to Thursday and now it may be Friday or sometime thereafter. It better be before Sunday because after that I won't be around as much because of Giovanni's hospitalization and I really wanted to have that experience with the kids. They are excited but going through a, "I miss Omaha, when can we go home" phase so I wanted to make the transition fun for them and help make sure they feel comfortable and at home in the new place. I am struggling with them being away from school and their friends. I haven't done a good job keeping them up with their classmates and sending things to them. I don't want anyone to forget Aria and Miles. Tarah is doing a great job keeping them up on thier learning and lessons. They are very smart and so excited to learn new things. It is the friends and social interaction part they are missing that worries me. Aria met a little boy at the Pizzeria tonight when she went with Brad to get dinner. She was so excited that he came over and talked to her and that he was only a year old than her. I have been told their are kids around our new place so I am hoping she will get a chance to play with others close to her age.

I have more to share about the new place and the experience Brad and I had going to the town and another nearby. I will probably be doing more blogging while Giovanni is in the hospital so I will share more of these little stories.

I feel like this post is rather whiney and I apologize. I think I am in a mood tonight so I will wrap up this post by sharing some photos since we have been here.

Thank you all for your continued support. We truly need each and every bit of it. Again , I have not responded to all the messages I have been sent but will try to get through them in coming weeks. I just don't get on the computer much and when I do it is like a drive-by computer session.

I took Giovanni and Liviana out for photos yesterday. Tarah was my trusty assistant as we tried to capture photos of the two to commemorate their 1st and 3rd birthdays and their affection for one another. Liviana adores her "G-Mawny" and Giovanni has discovered that his big sis is pretty cool to hang out with and play games. Here are few from their photos. I hope to take them out again in some of the fabulous Milano streets someday soon. I hoped to do it before he went into the hospital but I am not sure if that will happen now. The logistics without a vehicle is a challenge and there is already a jam packed week ahead of us. These were taken on the outskirts of a very large park nearby.















































































































































Did you see her standing? She is such a strong, amazing little girl. Never Gives Up! Her posture is worrying me a bit and she has good and bad times throughout the day with how straight she sits. She was taking a nap in the stroller when we got to the location for the photos so she was a little "slumpy" in the photos. Still so beautiful. Giovanni is a crack up. He ran towards me many times so I have walking photos too.

These photos are from D'uomo. I shared information about the church a few posts ago. They had two areas for lighting candles for prayer intentions. The kids wanted to light candles for Liviana and Giovanni. It was a special moment for all.








































These below are from the Pasticceria by our hotel. The lady makes all of the cakes, pastries and chocolate treats herself. She is SO sweet and looks so tired from all of her baking. The entire bottom row was all homemade pasta. Go figure I am more intrigued by the pasta. The third photo is of some of her sweet treats that I brought home for the kids one night.




























































This is a random shot from an outing Aria and I took around the area. I have more shots of her I need to get up too.



This is a little grouping of shots from Giovanni's room from the first hospital stay in the party floor (See previous post). He looked so small in such a giant room. It seemed to be a metaphor for all we are facing. The tub photo is from our hotel room.





This last shot is from our room. Liviana and Giovanni didn't have a place to sit to eat since we got here. Livi sat on the "couch" to eat and Giovanni was on our laps or walking around while eating. It was a disaster for both and I noticed Giovanni wasn't eating as much compared to when he was in a high chair. We got these seats that attach to the table so we could take them with us when we eat out since all places don't have child seats. They were both so happy and they and ate and ate...as you can see...everyone else was done and they were still going. We just thought their little legs looked so cute dangling down :).




That is all for now. I am hoping to feel a little renewed tomorrow after Giovanni's MRI. Brad and I have to go to Ikea to get stuff for our new apartment. It is supposed to be furnished but is lacking all kitchen stuff, two beds, a dining table, linens, towels, etc. They told us they would reimburse us to a certain amount for the things we need. I know, it is torture going to Ikea in Milan but we will do what we have to do (my joke for the day).

Hug Your Babies!

Amy

Wednesday, February 2, 2011

100th Post

As I was getting ready to post I saw that this will be the 100th post on Liviana's blog. Who knew when we got pregnant with our 3rd child in the spring of 2007 that we would take this journey that has led us from Wichita to Omaha and now to Milan. It has been a path filled with love, fight, fear, survival, joy and a thriving. It is still hard for me to look at her knowing what she has survived already and try to understand why she has to go through this now. That same spirit that fought so hard against her CDH still shines through in her today. She still will get on and off of her "couch" (it is a cot that we have made our couch in our hotel room) and just stand, holding herself up. She knows she can't walk and she knows she can't stand up straight or without holding onto something but she keeps trying and trying and trying. She knows we need that. She knows that seeing her strength gives us strength.

I find myself just staring at her sometimes. She is such a beautiful child. She of course has an amazing beauty inside but she is truly stunning on the outside too. She is exactly what you would think of an angel looking like. She has the most amazing skin tone, beatiful blue eyes and eyelashes that little kids have walked up to touch before, they are so long and thick. Her dark curly hair is so dainty and perfect for her face. I love our sweet angel so much and I would give anything to see her running, walking and playing with her brothers and sisters.

I snapped a few shots when she got out of the bath one day. I adore and love her so much that it hurts.

I am not calibrated here and my monitor obviously just traveled from Omaha to Italy so pardon if my color is horribly off on these.




























Love to our angel on earth.

Hug Your Babies! You NEVER know what will happen.