Friday, January 11, 2008

A little cryin' goes a long, long way......

I don't think it's a secret that I've been a bit frustrated with the Oncologist we're working with. It's not that I don't like Matt's primary doctor, it's just that she is busy with other patients/not available/out of the office/only comes in once a week/on personal leave or other such situations. I *think* there's something going on there, but no one will give us specifics. I really like the doctor we have been meeting with most often, but he has made it clear that he is not calling the shots about Matt's care, and that he isn't a neuro-oncologist. Again, he is a fine, kind man, but we want a specialist who has studied brain tumors and works primarily with children who have brain tumors. Warren and I left Matt's last appointment discouraged with the lack of information, lack of interpretation of Matt's scans, and lack of involvement by this doctor that we are supposed to be trusting to save our son's life. We have been strongly considering seeking a third opinion and even transferring his care to someone else - even though that would involve extensive travel at least once a month.

Anyhow, Matt had his blood counts drawn on Wednesday and yesterday we still had not heard the results. So, I called Oncology and let them know we hadn't heard Matt's numbers. I also gathered my courage and told the guy I was speaking with (who runs the office) a little about my frustrations. I also asked if he could tell me what was going on with Matt's doctor - he couldn't. I started to cry (how embarrassing!) and told him how discouraged I was that I didn't feel Matt had a primary doctor. It feels, to me, like no one is looking out for his best interests and I also told him that Warren and I were considering taking Matt elsewhere for treatment. The office guy said he was going to pass along my message and have the head of Oncology call me back.

A few minutes later I received a call from Dr. Lemons. He is also a neuro-oncologist (which I didn't realize - I thought our first doctor was the only neuro-oncologist on staff). He listened to my concerns, validated my concerns, said we needed to seek a 3rd opinion (this was his suggestion, once he looked over Matt's chart and saw that we had a variation on pathology opinions). I told him how unfortunate I thought it was that Matt had never met with his primary doctor. Long story a little bit shorter, he is going to take over as Matt's primary doctor! We will meet him the first time at January clinic! He said he would go over a lot of details about Matt's scans, diagnoses, and treatment options. I am so thrilled! I am embarrassed that I broke down and cried to these people, but it seemed to produce the results that we really needed. Hopefully, with our new oncologist, we will be able to hear more details and feel more confident that we're heading in the right direction with Matt's treatment!

In other Matt news, on Tuesday he had the opportunity to go to SLC with the 4th grade from his school to celebrate the re-dedication and renovation of the Capital building. Three schools from Logan went and had a 30 minute performance in the rotunda. It was so fun! Matt even had a speaking part. He was the first speaker and introduced their schools. His teacher said that he was her absolute first choice because of his expression and confidence when speaking. I was so proud of him and couldn't help but compare this confident boy with so much talent, to the boy who started the school year who was unable to remember where his classroom was! We have watched an incredible transformation over these past 6 months. There is still a long way to go, he has good days and bad days, and I'm not sure Matt's memory will ever be at his pre-tumor 100%. But if it didn't get any better, he would learn to compensate and would be able to function just fine. I would not have felt that way six months ago! We are incredibly thankful for this progress, and that Matt is still his happy, sweet, quirky self!

Love,
-Alli

11 comments:

April J. said...

I am embarrased to say I haven't been keeping up so I don't know all the details of Matt's progress. I think of your family often and they are in my oprayers continually. I am sorry it took tears to get what you needed but I am glad none the less. You are an amazing example of strength. You little man is an inspiration too. Thanks for sharing in such a trying and difficult situation.

Mindy said...

Don't be embarrassed about crying. Crying is good for getting out of speeding tickets and getting the help you need in any situation. I just can't believe you haven't broken down in tears before this. I would cry every time I went into their office, if I was in your situation. I am so happy that you finally have a Dr that will explain everything to you and really be able to give Matt the best care possible. Good Luck, we are keeping you in our prayers.

Karen said...

I am soooo glad you did that. It seems that the only way to get what you think your kids need is to either raise your voice or cry. Crying I think is the better because it shows more concern than frustration. I didn't know he was an Neuro-Oncologist either. I have only seen Dr. Lemons once and it was Marcus's last appointment. He seems to be pretty nice and I am so glad that he suggested you getting a 3rd opinion, which should have been suggested to you quite a while ago, in my opinion. I am so happy to hear how well Matt is doing, it gives me goose-bumps. Hang in there and I hope you feel better about your new DR.!
Love,
Karen
p.s. if you want to email me personally you can at lagorda67@comcast.net.

Burton Family said...

I am just glad that you got the reassurance that you need! It just makes a hard situation much worse if you don't feel confident about your child's primary dr. We enjoyed your card and pictures. We love that you take the time to let us know what is going on. You are all in our thoughts and prayers always
Cristy

Katie said...

Yeah! I'm so glad something turned up to help you feel better about things. And cry all you want!

How's baby Jake doing? Is he a good sleeper for you? I am so glad he has red hair!

Deborah said...

I'm so glad Matt's doing well and that you have a doctor who is actually going to physically and personally look into your case. I can completely understand your frustration at breaking down but I think his previous doctor needs to know the effect she's having on her patients and her lack of attention and focus on them. And like you said it produced the needed results so good for you! (and congratulations on the new doctor)

Slim Pickins said...

i'm so so happy that you'll be with a new doctor, i think it is so important to be with a doctor who listens and knows you. the tears were worth it!
love you & your beautiful family, courtney

nola said...

Alison and Warren--We had no idea. We recieved your Christmas card on Saturday and just read the whole story--Oh my goodness!!! All this and a baby too???? We are praying for you and yours and want to stay updated on Matt's progress. I can't believe how life can change so fast! Please know we love you and you are in our thoughts and prayers--Please send me your email so we can reconnect--Give Matt a hug from Nick--He was really concerned also--Nola Porter and family

Karen and Lew said...

I can't believe that you are this far into Matt's treatment and his (former) primary doctor still is out of the picture! No wonder you felt like crying! It makes me think of that recent study that showed that many oncologists score low on the sharing-emotion-and-having-empathy scale. Hang in there! Thanks for the Christmas card. I lost your address. Now we can send you a belated Christmas card in return.

Katie said...

I don't think you're the first parent to call a doctor and end up in tears. Totally justified, and totally worth it! I'm so glad Matt's going to be getting better care.

That's so great about Matt's progress. Blessings abound!

Darla said...

I'm so glad to hear about Matt's progress in school. So great that he had a part in the field trip to the capitol. I'll be sure to tell Shayla. Love to you all. DArla