Wednesday, March 30, 2011

I've been avoiding updating everyone on what went on today at the appointment. Sorry. This morning was such a roller coaster of emotions. I am really missing the older kids, it feels weird without them here. But I felt glad that it was finally Wednesday, but scared and sad also. We ran some errands before the appointment to kill some time and we got the Wyatt, Emma and Grayson some super cute Twins outfits for when we go to the game this summer (this isn't official, just a dream of daddy's to take his kids to a Twins game, hes such a great daddy). 
Well, we ran our errands and couldn't put the appointment off any longer so headed to Children's in Minneapolis. We couldn't find a parking spot which made things worse, I just hate parking up on the roof level! This was our view....

We got in and I was just so hoping we wouldn't see any other kids in there that looked "sick." We had a little bit of a wait but seemed to keep busy with the fun stuff they had in the waiting room. Lots of toys, pac man, a train table, and this cool little xray thingy set up. Of course we had to play with this stuff lol.

~Bad boys, bad boys, whatchu gunna do!?~
We were doing ok. No crying or anything...then I seen the books they had...
The ABC's of childhood cancer?? 
I got hit me. 
We are in the waiting room at a children's cancer center...this is NOT right!
Then after seeing this book I turn around to see this little girl and her mom walking in. She had on a little scarf around her head and she was walking really slow and she was really pale.She was holding a stuffed animal and just smiling away.  
This is what I was scared to see...
how can such horrible things happen to children, and yet these kids are some of the happiest kids you could ever meet...
I almost lost it, but i didn't. I wanted to hear what the Dr. had to say.

Finally, we got called back and they did height and weight. Grayson is now 19lbs 10ozs, and 28"!! Growing boy! :)
The Dr. came in and she did a whole lot of "Dr. talk" but at the same tried to tell us things so we could understand. She seems like a great doctor...just not so great at talking to people lol. She said that she is working with other neurologists, oncologists, to try and figure out what is best for Grayson. We didn't get solid answers and we aren't sure when we will. She said that if the tumor was in a different location, they would go in right now and biopsy it. But its in such a horrible location that the "risk out ways the reward" and she said we would have a hard time finding anyone that would be willing to biopsy it. Its just too dangerous for Grayson. They could paralyze him by going in to get a sample of the tissue, and on top of that, they may not get enough tissue, or tissue that is "scar" tissue and doesn't tell them a thing. Ugh. She called it a "medullar tumor" and also a "glioma." 
She said that they are still going to test for some other things that it might possibly be but doesn't seem like it is.  They just need to rule things out now, being they can not biopsy. Between the list of doctors working on his case, they want to test for a few things. An auto-immune thing of sorts that might be causing the body to fight its own tissue in the brain stem (which she said she doesn't think it is because the blood work is good), and also they want to make sure it isn't a secondary problem to some bigger problem elsewhere in the body. So they have decided they think he should have an MRI of the spine (to see if there are tumors further down the spine), a CT Scan of the whole body (to see if there is cancer somewhere else), Lab work (his white cell count was a little high in the last set of labs), and also a spinal tap ( to see if there is some kind of infection in the spine causing an auto-immune response which maybe be causing the growth-she wasn't sure of this either but its something that needs to be done to rule it out). They want these things done all at once, next week.
Then, he will have another head MRI in 6 weeks to check growth. If the tests prior come back showing nothing and the MRI shows growth they will proceed into "treatment." She said that they want to avoid the treatment at all costs. Hes just so young. She said they will start with a steroid of sorts to try and stop swelling, then next would be chemo. I hate that word. I hate all these words...but if that doesn't help, the next step is radiation. She said radiation is the last resort next to biopsy. Radiation can be localized and shouldn't do too much brain damage but it can cause other cancers. So we would fight cancer and cause cancer? So, hes so young he doesn't have many options...and we need to stop this thing from growing. I'm praying that it doesn't grow anymore...because it doesn't matter what this damn thing is...its grown and is causing problems for my son. 
Ok, so at least now we have a plan, even though we don't have answers. I don't know how I feel about it. I hate that my son is going through this. He is a happy 10 month old baby and it kills me that this is what he is dealing with. I just don't get it. 
We are going to fight a family.


  1. I found your blog a couple weeks ago through another blog and I just want you to know how incredibly brave i think you are. I cannot imagine the emotions you are going through right now. I pray for your son and think about your family every single day and i just wanted you to know that. <3

  2. You know what else cures cancer? Vitamin C. True story. Google it.

  3. praying for you guys! stay strong jess!

  4. Wow... I have been typing and backspacing for a couple minutes now... its hard to know what to say. I type something and then I think "no... that doesnt sound right" and I backspace. Just know that I am thinking of you and praying real hard for everyone. Stay strong mommy and daddy!!

  5. Jessica and Jesse,
    no words can describe how you or we feel, our hearts are all breaking for the little guy, and we will get through this and fight this as a family! Grayson is one tough cookie and he alone is going to put up one hell of a fight... this is not going to stop him from enjoying life. we are here for you and will help when we can. just know there is ALOT of prayers being said for him and the family.
    love you lots... dad and Wanda

  6. Praying for you all. God heals and I am praying he will heal your little one. And also praying for strength for you and Jesse and the rest of your family.

  7. Thank you for your prayers...we are still hoping and praying for a miracle <3

  8. *hugs hugs and more super big hugs* praying for you guys every single & hugs.


Promise to self

Dear self, I promise to always be a light for my children, even on days that feel incredibly hard. To encourage every bit of their hearts ...