Tuesday, January 4, 2011

Italy Bound

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!



Candice and Rob Beal said...

I am praying! Praying praying. I have no other words to offer but just know that im praying.

Jackson beals Mommy
Candice Beal

Kennagurl said...

Praying on my knees for you and your babies. Because of your blog I hug my little ones tighter each night. I am reminded of what a gift life is. You are such a wonderful mother. Stay strong and know that we serve a BIG GOD !! I am praying for BIG miracles for you and your family.

Krystle said...

You have a beautiful family. I saw your story on NBC tonight, and wanted to wish you luck on your trip to italy. I will be a follower of your blog to see how your babies are doing. Your family is in my thoughts and prayers!

I am going to go hug my babies (well at least kiss them so I dont wake them up).

Matt, Jena, Joshua and Hoss said...

We will cry for you. We are also praying very hard for you all. I can't tell you how much this touched my heart tonight on the news. Our family has had 4 heart babies and one Spinabifida baby and these all have pulled us closer together. I pray for your son to be healed and your little Liviana to feel comfort with you all as I see she is a very happy girl. I pray you all feel that so many people are praying. Safe travels and I plan to follow your blog! Jena McKenzie

Anonymous said...

We seen your story on channel 6 Good Luck and hope all goes well with plenty of prayers from a family in iowa and hope our little donation helps. Just remember miracles due happen

Anonymous said...

You don't know me, but I am a mother, enough said. My heart breaks for you, I am praying for a miracle and for strength for your family.


Anastasia said...

I continue to pray for you and send good thoughts and hugs your way, Amy. Good luck, safe travels, and keep us updated. God bless you!

Vince and Patty said...

You amaze me. I feel as if I am breaking just reading your updates and yet you just go on and do what you have to do. Please know that you have our prayers and well wishes a million times over.

Patty D'Angelo
mom to Charlie, LCDH survivor, 2/4/09

rebecca lopez said...

My heart goes out to you and your family. I will be praying for safe travels, healing, peace, and comfort for you all.

Anonymous said...

Praying for a miracle for your beautiful family!

Emily K said...

Amy - My sister died at age 25, suddenly and unexpectedly. You are right. You have the rare "gift" of savoring every moment with your little people.
Praying for you and your family on your journey to Milan.
God bless you. His grace will sustain if you but trust in His will.

Anonymous said...

I was just informed about your blog and situation on momaha.com I don't know you at all, but I love you and your family. What blessed and fortunate little souls to have you and your husband as parents. Please know that you, your husband, and your beautiful children are constantly surrounded with prayers and postive energy. Thank you for sharing your journey with us.

Kitty O'Kane

Anonymous said...

Hi - I am Kenny's cousin, don't know if Brad will remember us. This is so sad but your attitude is wonderful! God is good and we will be praying for you and your little ones. Randy and Sandra Bane

Liz James said...

Amy, I'm glued to your facebook and blog to get every bit of information possible about what's going on. I will continue to fervently pray for you and your family. Your children are strikingly beautiful. I want to meet them and you someday soon. I have not had the honor of mothering a child YET but when that time comes I'll never take a moment for granted. You have truly shown me how far a mother's love reaches. Much love, Liz

Lacy Hilliard said...

Amy, your strength is inhuman. You may feel unorganized but it sounds to me that you know just what you need to do and you're carrying out that plan with grace and wisdom.

I continue to pray and think of you and your babies each day. Much love and stength to all of you.