The Gift of the Magi

MRI showed that the nodes are not cancerous:) More results to come.

Thank you for your continued support. We could not do this without you.

Merry Christmas!

Quick Update 8

So we are going to get some blood work to find out if the lumps could be caused by a virus. There are two different viruses Dr R is suspecting Lil may have. He is not ruling out that the lumps are signs of cancer. The good news is cancer lumps do not usually move and hers are moving. But there are too many other risks and signs for us to rule it out completely. He also found more lumps in her groin area. He is going to add her neck to the MRI for Thursday, do some blood work and we will keep and eye on things, wait and see.

How the Grinch Stole Christmas

I have ALWAYS been one of those ridiculously annoying people who starts listening to Christmas music the day after Thanksgiving without shame, gets excited when the red and green bows show up on store shelves in October and has most of her gifts bought by September although the list seems to grow throughout the fall so that the chance to keep buying and giving grows with it.  It is pathetic and has elicited groans and moans from those who know me best most of my life.  Even last year when we spent most of December in the hospital I was hanging Christmas decorations on our non-opening windows. This year I can hardly even muster a smile for poor little Charlie Brown; but I am working on it.  I know how much we have to be thankful for.

LillyAnna is still suffering in much the same way with her arthritis.  She has her good days and bad days.  The doctors have decided to switch her Methotrexate to an injection due to the fact that even when we can get her take the medication (which is rare), she usually vomits it right up or vomits at some point that evening.  We are questioning whether or not these medications are even effective so before we do that we have to make sure she is actually getting the full dose.  We did the first injection Friday night.  We will do the injection once a week.  She still gets Humira injections every other week.  Thanks to a special person we got our hands on a Buzzy Bee and it has become Lil's new best friend.  Seriously, she wears it everywhere when we let her and I do think it helps with injections, we will see if it helps with IVs on Thursday.  She is sleeping better because on top of giving her Meloxican each night (a 24 hour pain killer similar to Advil but more gentle on the stomach) we are also giving her Oxycodone.  She is sleeping better because Mommy has been laying down the law a bit... more on that later. 

Unfortunately Lil lost almost two ounces in the last two weeks. That is significant when you having been holding fast at 10 kg for over a year. There is not much we are going to do about it until after the MRI which is scheduled for this week.  I do not have a good feeling about this MRI.  Historically, Lil is not easy to 'put to sleep' and she definitely does not do well with IVs as we all know.  The good thing is I am one of those people whose bad feelings are NEVER right (if you are pregnant and I guess you are going to have a girl, it is pretty much guaranteed you are going to have a boy.... get it?)  The other piece of this puzzle is that the day of LillyAnna's MRI is the anniversary of my mother's death.  My mother died on December 19th three weeks before my twins were born.  Whatever... I know LillyAnna is in good hands.  AI DuPont knows her issues well and there are so many people there who care about her.  When we go there (which still ends up being at least once a week) I feel like we are visiting old friends.  It is so amazing to me how much the people there really care.  I try to walk away from them because I feel badly that they are on their lunch break or whatever and they are still asking me questions about how Lil is doing.

The big battle that has been raging in this house lately is the War of the Crib.  LillyAnna is still a two year old a very smart one at that.  It is so hard for me because when she does not feel good, she wants me to sleep in her room with her.  I know she is two, I know she is smart but she is still my baby and she is in pain. 

 

So this week she and I have battled.  We had a long talk about her needing to sleep in her crib and me needing to sleep in my bed and that if she cries when I leave the room, she will throw up.  Sometimes, many times, she throws up anyway and then gets really upset like she did something wrong.  I hope I am not damaging her mentally.  She is doing well and has learned that she needs to go to sleep by herself.  I don't know how much of that has to do with her pain being controlled by the Oxycodone which is a pretty hard core narcotic.  Or is it just knocking her on her ass because it is a pretty hard core narcotic?   These are the kinds of arguments that happen in my brain all day. 

 

It is one of the reasons I enjoy my job so much.  When I am working at the restaurant, I cannot think about Lil or the hospital or these questions, I am just too busy.  I get to be normal and it feels so good.  It helps that I work in a great restaurant with people who have a real passion for what they do.

 

 

About two months ago my very observant father found two small lumps on the side of LillyAnna's neck.  They were hard and about the size of a pea.  We showed Dr. R and he said they were probably lymph nodes and to keep an eye on them.  Friday afternoon Chris was giving Lil a "big hug" and felt the lumps again.  They have grown in size.  One is now the size of a marble and there are two more on the other side of her neck.  Dr. R is going to see us tomorrow and check them out.  I am trying not to worry.  It is most likely nothing; the problem is that the idea that lymphoma is a side effect of Humira is always in the back of my mind but I also know that she gets bloodwork so often and signs of cancer would have shown up there. 

 

So I am working on keeping that Grinch at bay. Chris has been wonderful.  He keeps putting the Christmas music channels on for me because he knows I like them and he has taken all the decorations out without me asking.  We have so much to be thankful for.  Last night we went to one of my favorite events of the year, my friend Jason's Christmas party.  We had awesome babysitters who braved the snow, came early, stayed late and then told us how good the kids were!  The party ended with my one of my most important friends sitting in a chair crying quietly and me kneeling at his feet, head in his lap crying quietly too.  He just kept saying 'this could only happen to you because you are the only one who has the strength to handle this, the only one'.  I know that is not true but to know he feels that way meant something.  

 

Lil is not dying and she does look pretty happy sometimes.  She enjoys her life and this is what her life is going to be, it could be so much worse.  But I am tired.  I am learning to live with this life but it is so hard.  It is so hard to watch your baby throw up constantly, to be on constant vigil of wounds and weight and lumps and swelling and the unknown, it is just so hard to see your baby in pain.  It is hard to watch how all of this affects the rest of your family emotionally and financially.  It is hard when it goes on and on and you see no end.  It is hard when there are so many unknowns and you want to fight and fight to help her but you do not even know what you are fighting against.  I do know what I am fighting for so that is what gets me out of bed in the morning and keeps me moving forward.