Decision

After our UCLA appointment, we set out on a cookie hunt. My sweet friend, Jill (who bleeds UCLA) suggested we go to Diddy Riese for a cookie after one of our UCLA Clinic visit. Oh my goodness....she is so right. These cookies are too good, and it was fun to have a treat after our hospital morning.
I seriously dislike the photo of Liz because she looks so tired and the circles under her eyes make her look sick, but she was gettin' down on that cookie ice cream sandwich, and I'll always love this memory.




It is hard to know where to begin with the update on Elizabeth, as it all seems difficult to put into words and even more difficult to fully understand.

Monday we met with the new UCLA GI doc and though the appointment offered no treatment plan because the doctor wanted to read through Liz's chart notes that I brought her from her LB GI, we both liked her. Tonight she called me, ready to offer some forms of treatment because true to her word, she read and studied the 190 pages of Liz's chart last night. She is recommending we follow the course of treatment UCLA has used for their organ or marrow transplant kids who suffer with recurrent or chronic CDifficile...that is, to do long term one week on, one week off of Rifaximin, in hopes that being on this drug long-term will help keep the CDifficile quiet. I agree with this.
Today we saw the GI doctor here in Long Beach. He is recommending Liz undergo another gastric emptying study (it is pretty cool, actually. Liz eats nuclear eggs and then has images taken over the course of about two hours to identify how the contents of her stomach are moved). This too, I agree with. Both doctors are on the same page with the idea that much of Liz's pain is related to nerve issues. She has had so much manipulation of her insides and has so much scar tissue from each procedure and surgery, that her nerves are super sensitive and going crazy. This is an issue in addition to her motility issues and the CDifficile. Anyway, I feel good about the things being done right now in regards to her tummy- and all that falls under that category.

Yesterday we also met with Dr. Brilliant. I will leave out the A**hole part in this post because that isn't a very polite thing to say and also because Dr. Brilliant played nice yesterday. He was kind to me and even gave me a "let's start over again" smile as he entered the room. I came to play and showed him the assertiveness he wants from me as I challenged him. At one point, he listed Elizabeth's diagnosis' from an Immunology stand point. He said "Liz has...
* IgA deficiency,
* IgG subclass deficiency
* Antibody subclass deficiency
* Anti-platelet antibody positive
* potential bone marrow failure process
* And a great attitude!"
I told him he can add her sass to that list and suggested maybe that is why he and Liz get along. ha! Match point, Dr. Brilliant!
He suggested we start Liz on IVIG (Intravenous Immunoglobulin)therapy. Liz will get pooled blood product given intravenously and this blood product will give her immune system a boost. It sounds great, and it can be, but it holds its own risks; big risks actually. It also causes some not-so-great reactions at first and it is super expensive ($3,000 per infusion for children). Having said that, it is likely to make her feel so much better and her body will likely perk up and be able to fight infections much better. IgA is important for the health of our GI system, and hopefully the IVIG will help even her tummy because currently she is IgA deficient. Also, IVIG has also been used as a form of treatment for CDiff.
The decision weighed heavy on my mind all day and all night, but this afternoon, after speaking to both GI doctors for their opinions, I made the decision to go for it.
Liz will see the Hematology/Oncology doctor on Wednesday who is a well-known, highly regarded Dr. Brilliant in his own right, minus the a-hole part. There is talk that he may want to do another bone marrow aspiration before she begins IVIG, as IVIG is not universal....meaning, each patient has their own concoction of blood product based on their needs. So, Hem/Onc may want to add something to the mix. We'll have to see.
For now, I feel good knowing we have a plan. It won't cure everything and it won't be a quick answer (Imnnuology is recommending weekly IVIG treatments for two years!), but it is something that for the first time in a long while feels hopeful.

Today Liz wore her mask to the GI appointment and then shocked me by saying she wanted to go to the school with me to get Kaitlin and she wore the mask there! By wearing it in front of friends and classmates, I know she was taking a big step. She noted how people stared at her and they asked why she was wearing "that", but I told her most people will only ask once. She doesn't have to wear the mask all of the time, as hand washing is the most important thing in keeping her safe, but she does need to wear it in large groups (of kids especially) and for sure we want her wearing it at Clinic or the hospital.

Tomorrow her new Home Teacher will come to the house for the first time. Peace be with that poor man, because Liz is against the idea from the get-go and upset that she has a male teacher. Choose your battles is what I am trying to teach her, so I am encouraging her to go along with this and save her feist for another issue....weekly two-hour long transfusions, for example!

So that's it. A decision has been made and that weight has been lifted. Of course I have the weight of knowing how sick my Liz is, but at least I am not feeling totally powerless at this point now that we have at least a bit of a plan.

For those who continue to pray for us and encourage us, thank you! Please keep praying.