We just received bad news

When you have a chronically ill child you do everything in your power to fix the health issues. You try like hell to be positive and carry on with life as normal as possible. However, in the back of your mind, your always afraid of when the other shoe is going to drop. When the phone rings unexpectedly and it’s the hospital or another specialist, your heart sinks because you have no idea why they would be calling you. 

This may not apply across the board but it certainly does the Lost and Tired family, especially when it comes to Gavin. Today, an otherwise routine call to oncology has turned into an absolute nightmare for us. This is what happened and everything we know for sure at this very moment in time. I will pass along information as we get it.

When we updated our phone numbers with the hospital thinking that it would migrate to all the doctors.  It worked,  with the exception of immunology because when they moved buildings,  they opted out of the connected system.

Anyway,  Lizze called up to oncology to talk about Gavin‘s next infusion.  We needed to have it moved because Gavin‘s EEG were scheduled for the same day in July.

While on the phone with oncology, Lizze asked about the results of this months blood work.  She had no idea what she was about to hear and was not prepared to hear it.

Apparently,  the IVIG infusions are not working. The nurse read off some of the results to us before realizing that something was very wrong. This is what we know for sure and what I understand is supposed to be the normal immunoglobulin levels.

Gavin‘s IgM level was 17 (normal is 30-60). His IgG level was 700 (normal is around 1000). The even scarier part is that his immunoglobulin levels that were fine before are now crashing as well.  His IgA level is very low,  although we didn’t get the number.  While I don‘t known what this means,  we know it isn’t good news.  I don‘t know about his IgE levels either because we haven’t seen the paperwork and oncology got to the results of the IgA and said that she needed to call immunology right away.

I don‘t know what we are supposed to do.  If you recall. when this whole thing started last year, they had suspected something called Ataxia Telangiectasis (see When the light at the end of the tunnel…..is a train for more information on Ataxia Telangiectasia).

One of the reasons that was dismissed was because Gavin’s IgA levels were normal. Now that they aren’t, I’m terrified that we will be revisiting this once again as it explains some of the unexplained symptoms in regards to Gavin’s health. Symptoms such as seizures, loss of deep tendon reflexes, IgA levels, Ataxic gait and cognitive regression, just to name a few. These are all things that no one has been able to explain and now with the IgA levels being abnormal, what are we supposed to think.

It’s easy to say that we shouldn’t worry about this until we know for sure. However, I’m here to say, that’s impossible to do. How can we not worry? This disorder is terminal and while we had escaped a diagnosis last year, his symptoms have changed and one of the key missing pieces is now in place. What are we supposed to think? We won’t be able to speak with immunology until tomorrow and so we have all day to worry about this.

When Lizze called me upstairs to tell me the news, I found her crying on our bed. I feel like I need to be strong for her when in reality, all I want to do is vomit. I keep thinking that if it was really that important, immunology would have found a way to contact us. However, the truth is that these results may have only just arrived. The bloodwork was done at his last infusion, about 2 weeks ago. These specific tests are time consuming and it took us a few weeks to hear back the last time, as I recall. Immunology may have only just received them and we just happen to call before they got a hold of us. That wouldn’t be a first for us.

At this point, I absolutely don’t know what to do, think, feel or say. It’s really difficult not to freak out about this but we can’t let the kids think that anything is wrong. I don’t know if any of this will even make any sense because I’m having a really hard time thinking right now. My whole body is shaking and it’s difficult to type and string coherent thoughts together.  I hope this is understandable and doesn’t come off as gibberish.

If you could please keep Gavin in your thoughts and/or prayers, I would really appreciate it.

This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct is working against me.

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Nikki

Just found this blog. I don’t know what words I can type to comfort you but we will def pray for Gavin and the rest of you. I think you guys are doing an amazing job and can’t even begin to imagine how tough life is on a daily basis. My love and respect to you both xxxxx

Lost_and_Tired

Thanks Nikki. Thankfully, Gavin pulled through and is doing better right now. Thank you for your love and support. 🙂

Vet

First of all, I have no idea how I missed this blog, except for the fact that I have barely had time to get on here anymore. Second of all, I am wondering why my sister has not called/text me? She obviously needs me right now! Anyhow, you guys know that all of you are ALWAYS in my thoughts, heart and everything else I can muster up. There is no doubt in my mind that Gavin will be alright. He's a very strong little boy who has already been through so much in his short little life and has come out stronger than before. Also, I am Auntie Vet and I make the rules, so he has to be okay 🙂 There's not other way around it what I say goes. Please please please if you or Lizze need anything don't hesitate to call/text. I am NEVER too busy for a friend in need. I do feel bad b/c I feel llike I don't call/text as much as I should. Sometimes it's b/c I simply run out of time in the day and sometimes its b/c I don't want to bother you guys and I know you guys have a chaotic scheudled/life. So I always just think it's best to just let Lizze contact me when she has the time or free minute. You both just have to keep your heads up and remember that while Gavin may be taking steps backward he has also taken many forward doing things you thought he may never do! Love you all! <3

Lost and Tired

Vet,

Thanks. I will pass this along to Lizze. All the best to you and yours. 🙂

RebeccaMacDonald

Sending healing thoughts and Light your way.

OnyxPanthyr

You guys are in my prayers.  🙁

AlyciaSevier

I am sending all my positive thoughts and prayers your way.  this story gave me goosebumps and I am ready to cry with you guys.  You have held strong for so long!  Let's pray Gavin's strength endures as well as yours.

Jeanna

Just to tell you that I'm always praying for you, Lizzie and your boys, now more than ever!!
Jeanna

KathyKohlBuehler

Peace and prayers.

lostandtired

 @KathyKohlBuehler Thank You

jjean3940

Sorry, not meaning to overwhelm you with comments, but I have only been reading your blog for about a week and my heart is in my throat right now.  You are all in my thoughts and prayers, and if you ever have any medical questions I have been an oncology nurse for 12 years.  

lostandtired

 @jjean3940 Don't be sorry, I appreciate all your comments. Thank you for sharing that you are a nurse. Do you have any idea what this would mean. I realize your kind of going in blind on this but I'm just looking for basic, nondiagnostic information. 
 
Maybe Gavin just needs to have 2 infusions a month, which is something that has been on the table for awhile now. Thank you again for all your support. It truly means a great deal. 🙂
 

jjean3940

 @lostandtired he could, or if he is missing a specific protein, sometimes they can do replacement therapy.  I don't believe it's "curative", but it can be effective management.  

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