Archives for February 2009

I had a neighbor come by the other day who I haven’t seen much since Hannah was diagnosed.  She had been meaning to come by, but she just hadn’t had the chance.  She was asking me how Hannah was doing and how we are doing with everything.  I think I inadvertently downplayed the seriousness of the situation with Hannah.  I said she is doing great except for her obvious big abdomen, and I shared that she starts treatment in a couple of weeks.  She asked how I was doing, and I said I was doing relatively good.

The truth is that Hannah is not fine.  We don’t know what is going on with her.  We don’t know what type of Gaucher’s disease she has. We don’t know if her Gaucher’s disease is going to take her life before she even gets to be 21.  We don’t know if she is going to develop antibodies to the Cerezyme treatment because her GD is so severe that she doesn’t have any enzyme production, and her body may fight against the Cerezyme.  We don’t know if her minor developmental delays are just related to being born a month early or perhaps may be a sign of GD.  Hannah is going to have to go through hell for the next few months with the treatments not to mention the possible port surgery and the multitude of doctors visits. 

Am I really doing good?  I am holding my own.  I’m scared to death for Hannah, and I am stressed out.  I’m extremely worried about all three of our kids, and how this situation is going to affect (and has already affected) Little Girl A and Big Boy E.  I know I need to get them back into a normal life with extracurricular activities (her dance, him soccer), but I just don’t have the energy or the set schedule.  Having three kids is a hell of an adjustment. 

I’m worried about money — our savings is still dwindling, and I still don’t have an income yet, and I don’t know what we are going to do if I don’t start bringing in SOMETHING in the next few months.  Even with insurance coverage, we are still going to have to come up with about $1000 a month just for medical expenses that insurance DOES cover.  What about the things insurance may not cover?  I’m worried about next year’s insurance coverage, as even though coverage is good with Daddy’s company this year, they can make changes once the policy comes up for renewal.  Hannah’s Cerezyme will be even more expensive because she will be bigger.  

We don’t want sympathy.  I think Daddy and I downplay the situation to friends and his coworkers because we don’t want any sympathy.   But there is a part of me that thinks it is a mistake to downplay it when people ask as well … I’m not sure why I feel this way, as if we may be missing out on something.  It is hard to explain…if I understood why I felt that way, I would know what to say. 

The thing is I do want help from people, but I also want people to want to help.  But I’m afraid to approach people for help for fear of being turned down or being brushed off.   Self-esteem crash time, I guess.  But at the same time, it is hard to ask for help for something that you really don’t know what type of help you need.  I don’t even know where to start figuring out what I need help with.

I wish there was a manual on how to deal with this type of situation.

We had two appointments scheduled for today.  One was with Jewish Family Services to discuss what they have available for Hannah and our family, and the other one was with Dr. K., the hematologist/oncologist that Dr. G., the genetics doc, wanted us to meet with to get us familiar with the possibility of a bone marrow transplant.

I’ve cancelled both of them.

Dr. K’s appointment I cancelled last Thursday.  A bone marrow transplant is so far down the line for Hannah.  Not only would the Cerezyme treatments not have to work, but the Zavesca/miglustat (second type of treatment for Gaucher’s Disease) would not have to work.  Even then, bone marrow transplants haven’t proven routinely successful with Gaucher’s Disease.   I don’t know why Dr. G. wanted us to go see him Dr. K. so soon, even before we started the Cerezyme.  So my husband and I decided we will meet with him IF we need to at a later time.

As for JFS, we are still very interested in working with them and seeing what they have to offer.  But the truth is, I’m overloaded right now.  We don’t know what we are dealing with for Hannah yet (type 1 or type 3), so it is really hard to talk about what kind of services, if any, we would require.  I’m so thankful that they are there, and I do plan to visit with them after meeting with Dr. S., the Gaucher’s expert.  Hopefully by then we will have some more direction.