The arrangements have gone so fast in the last two days for our trip to Italy. I wanted it all to go quickly because each day that goes by I get more and more anxious that Giovanni is closer to onset and he must be pre-symptomatic for treatment. Goodness it feels like such a whirlwind. We are leaving for Italy on January 11th because they want to begin Giovanni's treatment process on January 18th...Liviana's 3rd birthday. Giovanni will be 1 on January 16th.
This is a copy and paste from Dr. Biffi's e-mail of what Giovanni's treatment will entail: Giovanni will first undergo collection of a small volume of bone marrow (upon puncture of the iliac crest) for safety reasons (it will be stored in case of future need) and positioning of a central catheter. This will require a 3 days stay in the hospital. Thereafter, Giovanni will undergo a disease staging and general health status evaluation that will consist in a number of laboratory and instrumental test to be performed in the following month as outpatient services. Then, approximately one month after the first bone marrow collection, we will begin the treatment. This will require a stay of approximately 6 weeks in the hospital. Thereafter, we will monitor him 2-3 times/week in the outpatient service until we will fill safe to send you all back to the states. Importantly, if we enroll and treat Giovanni, you will be asked to come back to Milano every 3 and then 6 months for clinical evaluations.
I have such an opposing mix of emotions as I read over and plan mentally for Giovanni's treatment. First, I am so hopeful that this will be what he needs to halt this horrible disease in his body. Then, my mind kicks into mama bear mode and I cannot imagine putting my "healthy" child through such an experience. We are supposed to protect our children yet I am going to hand him over for something so painful and difficult for something that isn't even happening to him yet. The other side of me of course knows that the alternative is waiting a year and beginning to see the same rapid decline in him that we have seen in Liviana with the same awful fate much to soon in the future. I also truggle with treatment for one child that the other cannot receive. I know however, if Liviana could make the decision that Giovanni get treatment even though she can't she would not hesitate to say, "Go for it". She ADORES her baby brother. Her face lights up when she says, "G-monny".
We didn't have passports yet so the only way to get them quick enough and guarantee we would have them in time is to go in person to get them. A wonderful client, named Lindsay Murray works at Senator Johanns office and contacted me offering help from their office and she put me in contact with Whitney. What wonderful clients I have! We will be leaving, as a group (I lovingly think of us as the Griswolds) for Minneapolis late tomorrow for an 8:30 am Thursday appointment for our passports. We just can't do anything easy around here.
I haven't been able to sleep much since New Years Eve when Dr. Rizzo told me that Giovanni was accepted into the Italy trials. I sleep at night between Liviana and Giovanni. I have been laying awake staring at the ceiling listening to them breath. I know as parents we all find ourselves listening to that slow, rhythmic breath and loving every minute of peace on their sweet angelic faces. That breath has new meaning to me these days. I beg for those breaths to continue, to not ever weaken, to not ever stop. I look at their sweet faces and cannot for one second imagine not being able to see them. It keeps me awake...it makes me cherish every second no matter how chaotic and stressful.
As Brad and I have navigated our way through all of this I have told him that we must look at it from this perspective...There are so many people out there who get that unexpected phone call that their child has been lost in a car accident or other tragic event. Their child is gone forever and they are left to relive those last moments as they left home that day whether it was a good exchange or bad exchange...that is the last sound of their voice. We have been given a gift, in a way, because we know ahead of time what is around the corner so we have the opportunity to cherish every darn second, live in the moment, cherish the moment and realize the importance of the moment so much more than most people ever have the chance. I insist on making a positive out of this horrible experience. I must. It does not serve anyone, particularly our kids, for me to succumb to my emotions and sit in the corner and cry (like I do in my mind). I may be rather scatter brained at times and I spend way to much time standing in the kitchen not knowing why I am in there these days but I am trying to do what I need to do as a mother...it is what we would ALL do as mothers.
Many more updates as we prepare to leave under the illusion of organiztion :).
Hug Your Babies!
1 week ago