This is a question Edgar and I have been going over in our minds for the past several days and it came to a head Sunday night. I haven't written much this past month because I don't know what to say. We see things that could be improvement followed by much more that is not. The tumor prevents Natalia from crying, however, she is so much pain at times that she is screaming and crying actual tears. She keeps saying she is sorry for doing this but My God what is she sorry for. It grabs you at the heart and rips you apart. The incisions while doing better are still not healed all the way and the largest, and our worst problem, has been there since the end of October. She is now tired most of the time. She will be awake for an hour or 45 minutes and then be so exhausted she can not keep her eyes open. We did family dinner night out on Sunday. We all went to Japanese Kitchen and did the girls first tepenyaki table. We got there at 5pm and by 5:30 she was sound asleep in her wheelchair. Nothing we could do or say could wake her up. Edgar brought her home to bed. Neither of us could sleep last night...and as you can see from the time of this post I'm not sleeping tonight either. We talked about everything thing that had happened and what we saw the future as being. We talked about whether putting her through any other procedures would be more for her benefit or ours to keep her with us. We made the decision together that we were not going to put her little body through more...she has fought with everything in her and we will not bring her more pain. The shunt was put in to help her get off steroids...she is still on them and every time we try to come off she is in worse shape. The port was put in to help make blood draws and chemo easier and more pain free for her...infection and a week in the hospital to have it removed. Now she is on tons of antibiotics and other meds to help her heal and she is still on the decline.
We took her to Children's Hospital yesterday for a CAT scan because she is so tired...usually a symptom that the swelling in her brain is increasing. Yesterday morning was definitely interesting...we called UCSF first thing in the morning Monday when Natalia was bone tired after only having been awake 1 hour...the nurse that answered had the nerve to ask if "we were worried or worried worried". What the hell? I thought Edgar was going to go through the phone...why would we be calling you if we didn't see a problem with her? She then told us to head to the hospital because the Drs would want a CAT scan. Edgar then let the head USCF nurse practitioner have it when he spoke with her because we had been told to call immediately if we felt she was not doing well and we were being made to feel like our concerns did not matter...needless to say when he called a little while later to speak to Dr Banerjee he was put right through. He explained to her our position...we were not going to put her through any more...no more procedures...no more hospital. Every time it happens she comes out worse. So no medivac to UCSF, we have an appointment for another MRI on Thursday to see what is causing this new tiredness.
I'm making special time for Sophia over the next few days...this was supposed to be her week in the spotlight and we are going to try to keep it that way as much as possible. Her show is this weekend and she has dress rehearsals all week. Mom and Dad are going to keep her Thursday so that she does not miss that last one. She has worked so hard for this play and even through crying last night she made us smile by belting out the Ompalumpa song over and over in shower...poor neighbors.
Much love to you all,
Roni
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3 comments:
Queridos, siento tanto lo que estan viviendo, pero creo que han tomado la mejor decision para Natalia, han luchado con todo para sacarla de la enfermedad, pero creo que ha llegado el momento de ponerla en manos de Dios, ahora disfruten mucho a su niña, atesoren cada minuto junto a ella, por favor denle un beso grande de mi parte, para ustedes todo mi cariño y solidaridad, y a la pequeña Pía, mi admiracion por ser una hermana unica, Dios se lo recompensará.
reciban todo mi amor..Muñe
Hello. While I don't know your family personally, I do feel connected to you through the Tripps. They are members of the congregation I serve in Livermore -Holy Cross Lutheran Church.
As the father of two girls, my heart breaks reading your posts. You little girl is so precious. I cannot even begin to imagine what ou guys are going through. I am tears even thinking about it.
A friend of mine shared with me Wednesday evening, as we both sat by her dying mother, that the two hardest things in life are coming into this life and leaving it. I thought - how profound.
In place of words that just seem hollow, I can only say that there are many hearts breaking alongside of yours.
Much love back to you, your family, and your precious Natalia.
With more questions than answers,
Pastor John Bost
Holy Cross Lutheran Church
Livermore, CA
Roni,
My heart is breaking....the tears keep coming. I can't make sense of all this that your precious family is going through....I will continue to pray for you, your husband and two perfect girls. You are showing such strength and courage. I will forever feel connected to you and will forever be Natalia's friend. She has impacted our family and found a permanent place in my heart.
Love Always,
Karen
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