I am sorry this is so delayed. I have been running on fumes and just hadn't been able to find the time to post. I actually started a post last night and never finished it. I know there are many supportive people who are awaiting an update and it is important for me to share our story with everyone.
We had a somewhat eventful trip here. The chaos started in Chicago when we got to the very crowded gate and they had been paging us for 20 minutes. They checked us in twice but the tickets were still showing not checked in. We stood there with 4 kids, two of which must be held and 6 carry on bags and it was HOT in there. We finally got on the plane and I mentioned to the flight attendant that our seats were all over the place and we had small children that could not be sitting by themselves. She said the flight was not full so we should find seats around the area we were assigned. We did that and started drama when another passenger came over demanding her seat. Given that I was very tired from getting up at 4am that day, hot and emotionally drained I suggested that was fine if she wanted to hold one of our children for the flight. I know...not nice of me but they told us to find seats and we did just that. I was not going to have one of our kids sitting in a spot by themselves and the flight had a TON of empty seats. It all worked out and another flight attendant came by who reminded me of Mr. Pitt from Seinfeld and said, "So you have all just decided to camp out here". At first I thought he was being snotty but I realized he was just being witty when I said we were sorry for the problems and he said, "Yes, I already heard about you all from the Check-In". Ahhhh, what do you expect traveling with 4 young kids, a ton of carry-on and tired adults?
So...flight was great from Chicago to London. It restored my faith in flying. I can handle it when you are on a massive plane where you don't feel and hear every little thing...the nice seats, personal tv's and service didn't hurt though. Liviana could not get comfortable or sleep on the plane. It was a difficult experience for her and she just cried and cried. I wish she could have laid down somewhere to be comfortable but that just wasn't an option. Brad and I rotated holding her and by the time we landed in London she was doing better.
In London we were supposed to get our stroller from the plane since we gate checked it. It, however, wasn't there. Liviana is very hard to carry because her body is so much more rigid and she can't be held normally. Add to that a ton of bags and we needed that stroller that we picked out for her before leaving on our trip. They told Brad to go to baggage claim but since we weren't staying in London we could not go to baggage claim without going through customs. We only had 25 minutes to get from to our plane to Milan and at that point we had missed the flight. I got in line to get on the next flight leaving at 9:30 (original left at 7:05) and the lady took Liviana's passport and went to a back room. She came back out and said that Livi had been flying illegally on an infant ticket and they would not issue her a ticket to Milan unless we paid for her entire flight in a seat. I told them that the flight was booked from the hospital in Milan and that I did not realize it was an infant seat until we checked in at Omaha and they said we would be holding two children. Basically, without $2000 Euros we were not going to get Livi a ticket. It tried to call my contacts in Milan but did not get an answer since it was earlier here. Brad and I tried to get to some pay phones which was impossible with the way Heathrow was set up without going out through Customs or to our gate. Long story short the lady who helped me was very nice and asked if, without prying, she could have more information about the specifics of the medical trip. She took a letter I had from our doctor in Omaha and was gone for about half an hour. She came back and said that she was arranging it all with the travel agency in Milan and she issued Livi a ticket (an infant ticket) and told us to go get on our flight. Overall all of the people in London were so nice.
So...Milan bound, late, dragging, running on major fumes. Customs in Italy was nothing. Handed him our passports, tickets, he stamped them and that was it. Brad went to collect our bags and my bag, our stroller bag (which also had our coats in it) and another bag were missing. They said that they did not show any issues with them in the system and they would let us know if they turned up. I was stuck in my clothes for 3 days. Bags turned up late last night (midnight...we were up and it was a welcomed call) and the last one turned up today, torn up badly but everything there. Many of the kids favorite things were in the last bag and we were very happy to see it and the stroller...and my clothes!
So...onto the important stuff. Giovanni and Liviana have both been to the hospital. We really, really like the doctors and everyone here. They are very kind, personable and have less of a "wall" as you get from American doctors. On the second appointment both Liviana and Giovanni had blood draws for their gene sequencing. For some reason, the 5 vials they drew from Giovanni have not yet made it here so that is slightly delayed. They have postponed his surgery to have his central line placed until the 26th due to a surgeon availability issue. I am somewhat relieved at that because I get to spend that much more time with him before sending him in for this experience that terrifies me so much. At one point the lead doctor was watching Liviana play on the floor and she turned to me and said, "It is very hard to look at her and watch her play and know that I cannot help her too" I could see in her face a real caring and concern...a maternal side that seems to come out in the doctors here. I really can't say enough how nice they all are.
Giovanni had a neurological evaluation to confirm that he was pre-symptomatic. My heart just stopped as the doctor started spending a ton of time on his feet. Looking at them from different angles, flexing them, speaking in Italian to the other doctors. It seemed to last forever and I was so so scared they were going to say there was something that would exclude him from the treatment. After a long conversation between 4 or so doctors in Italian she looked at us and said, "He is fine". Oh thank Goodness! I asked what the issue was with his feet and they said that one flexes more than the other and we will have to watch it as he begins to walk. When we got back to the hotel I was talking to Tarah, our babysitter, and she reminded me that Giovanni does a half crawl, half-walk sometimes with one foot on the ground pushing off and the other in crawl position (does that make sense). The foot he puts on the ground and pushes off with is the foot they said he has more flex in. I am sure that explains it and I will remember to mention that to them on Monday.
Today, Giovanni had a cognitive evaluation. As expected, he is brilliant :). He is just so cute and such a Bello Bambino. They all smile and laugh at him and he just eats.it.up. He is so funny to watch and they told us he did very well and they do not have any concerns in that area either.
Liviana is going to get great care here. We are so, so happy. She will get an evaluation on Monday and Wednesday along with Giovanni for physical therapy and her cognitive evaluation. She is sick again and had a fever this morning. All of the kids accept G seem to have a nasty cold that is lingering. I think it is what Giovanni had last week. Things just hit Livi harder. They gave me their cell numbers and told me to call them day or night this weekend if we are concerned about her. Our first night here Livi and Giovanni woke up at 1am and wanted to play. I brought them out to the "living room" and Livi was wanting to stand, walk holding my hand and was having a great time. It was so wonderful to see her so happy and active. This Italian air will be good for her, I can tell.
Aria and Miles are doing really great. I think they are going a little stir crazy in this small space so we are going to get out tomorrow with all of us to see some sights around us. Aria always says, "It is so beautiful here". She is so sweet. She is picking up on the words and language so quickly and is eager to learn. We will be doing school activities as we can too.
It is amazing to be in Milan even if it is for something so difficult. My observations so far are the clothes are awesome, the groceries are cheap and heaven for a foodie like myself and that I should have taken Italian in HS and College instead of French. I have French in my head all the time and I am impressed with how much I remember. I caught myself saying "oui" to our waitress the other night.
I am really scared about what Giovanni is getting ready to go through. Reading the details of his treatment is very hard. My mother instinct really tells me to snatch him up and run as quickly as I can. You think of treatment as something you do with a sick child, not a healthy, strong, vibrant child. I know we don't have an option though. I can't sit by and wait for his decline and demise. It is just so very hard. He will have to stay in his bed at the hospital for 15-20 days after his 3 day chemotherapy course. This child doesn't stay still for anything. I don't know what else to say...I am just so scared for him to go through all of this and not know why. We are supposed to protect our children and even though that is what we are doing the process to get to that point won't seem like that to him.
He has awakened and needs his momma to love and hold him.
Everyone's support means the world to us. We are trying to stay strong and doing it together. I promise to take photos tomorrow and a video of the kids. I hate to rub this in for my friend and family back home but it is in the 50's here :) but they think it is cold. We have seen people in ear muffs and big puffy coats while we want to skip along the hospital grounds like it is spring (ok, maybe not skip but it definitely feels like spring here).
Thank you, thank you, thank you for supporting us on this journey.
Hug Your Babies!
Check up DAY!
4 weeks ago