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 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!



kmm0305 said...

Once again, Amy, thanks for sharing your journey. We are thinking of you daily--I just shared your story with friends yesterday. We will be praying through all the upcoming changes with the start in treatment and the move. I'm sure Jayhawk b-ball is far from your mind, but we play there today. I'm sure it won't be pretty! :) (From my side, anyway!) Much love and support from the States.

Bluebonnet's Photography and design said...

Lots of prayers are heading your way, and lots of hugs are going to my kiddos today.

Emily said...

Oh Amy, I am so sorry for this nightmare you have to live through. But I will keep sending my prayers up to God for you guys, and hoping for the best. (((hugs))) I never stop thinking of you!

mcuprisin said...

Amy, is there anything in particular that your kiddos would like?
Praying for you as always! <3

Malory said...

I really cannot imagine. Your family will be in my thoughts.

craftytammie said...

Amy, I hope you know so many of our hearts are with your family on this journey. You are amazing!

Mary said...

Praying for you all

Dede Zimmermann said...

Hi Amy,

I live in Omaha and just starting out in photography. I have followed your work for some time now and love your photos!

Also, I have been following Liviana's and Giovanni's story and praying for all of you. I can't imagine how difficult this must be and the pain you are in. Just know that there are many people (I put you, Brand and the kids in a massive prayer chain) that care and are praying.

Strength and courage to you and Brad!

Candice and Rob Beal said...

so glaad you put your address. I will send money like i wanted to b4. You are in our prayers. This all just breaks my heart.

SAHMomof4 said...

I started following your blog some time ago - It is a source of great strength to read your posts. You and your adorable family are in my prayers. May God continue to help you through this time, may he give your family comfort and peace and strength to love each other everyday.
I'm usely more of a silent follower - but felt that I had to tell you how amazed and proud I was to read that you stood your ground with the doctors and told them you would continue breastfeeding. Good for you!!! I can see that you are an amazing mother - God bless you! Please know that, even though we have never met, you are being thought of with love and hope. I hope you are able to have some moments of peace today.

Liz and Shane said...

Just because I don't post on a regular basis doesn't mean I am not reading or keeping up with your posts. I think of you and your family on a regular basis. I pray for you and your family everyday. So glad that you stood up to the Drs. and told them how important it is for you to continue to BF. Thats a bond that you dont want to break especially now.
Thinking of you!

Aimee said...

I am not sure how I came to know of your family...maybe through the MLD discussion list? Please know that we are sending you all our love and prayers...we are battling MLD here in MD with our 6 year old hero...all of our kids are so amazing and we do all that we can do to provide comfort and hope - you are an amazing family and I can't imagine how difficult the next few months will be esp. being away from home...just know there are many out here praying for you all and holding you up.

With love and hope,
Mac (6, mld) Colin (5, unaffected), Brian and Aimee Murray

alessandra manzotti said...

Hi Amy
I just saw your post on Clickinmoms.
I just wanted to leave you a message (hopefully this is the right place) and let you know that I am from Milan, Italy and although I currently live in PA if I can be of any assistance (translation, etc) you can contact me directly at