Rhabdo

 

 

I like this pic because everyone keeps telling me this!

Well, that wasn't as traumatic as I thought it would be!    We have learned that the pet name for Rhabdomyosarcoma is Rhabdo (sounds like a weird dog name!)  So that is what we will refer to it as from here on out.

Our Oncologist, Dr. Jennifer Wright, came in special, just to see Jake (apparently she doesn't come in on Wednesday).  The bad news is, there are still more tests to be run!  More waiting!  Our favorite!  She has to determine how far along the cancer is and if it has spread to other parts of the body.  If it has spread, that is very bad!  If it is only in the groin area where they found it, there is an excellent chance of recovery/cure.

Until they finish running all the tests, they won't know what kind of drugs to use in the chemo therapy.  The good news is they know what to test for and they should know everything by Friday!

I asked if it would be possible for us to go on our Sweet Family Camp Out, or if they needed to start treatment right away.  Dr. Wright said she saw no problem with waiting until we got back, unless she made some drastic discoveries on Friday.  Jake said he really wanted to go, so at this point, we are planning to go.

Friday they will be doing a bone scan and chest CT to make sure the cancer has not spread there.  They will be looking at the lungs and the bones.

Monday, the 12th, we are expecting to get a central line put in near his clavicle and his first Chemo treatment.  He will have to stay overnight at the hospital, but should be able to come home the next day.

We asked lots of other questions, but they can't be answered until Friday.  If it is a good outcome, the chemo will last about 30 weeks off and on.

I'm feeling very hopeful and much, much better than yesterday.  Jake and the rest of the family are keeping their good attitudes.  Still lots of swelling, but not feeling sick.

A big hug of gratitude for my angels today!  We appreciate all you are doing for us!

Love you guys!

p.s.  When we got to the PCMC, they were having this fabulous BBQ out on the patio!  The smell of smoking steak saturated the air, teasing the taste buds!  As we were waiting for Dave to come out of the parking garage, I looked longingly at the fresh fruit and yummy spread and thought sadly of that pb&j I grabbed as we were scampering out of the house so we wouldn't be late.  So sad to learn that if we had arrived a bit earlier, Rick A. would have hooked us up with some delectable eats!  Not surprised that he was the one responsible for that savory smell!  They only do the BBQ on Wednesday so I think we are going to have to schedule an appointment for that day some time soon!

Jake Update 6/28

Have you ever heard of Rhabdomyosarcoma?  Me either.  I got the call about 1:00 pm today and unfortunately for you, my internet wasn't working until now.  My friend Karen text me and asked if she could come over, but I told her a needed some time to let it sink in.  Two minutes later, my friends Angie and Jill showed up at my door and I unloaded, cried, got some much needed hugs and then they changed the subject!  Can I tell you, that brought me right out of my low down, heart breaking funk.  I'm going to have to remember that for next time!

We haven't been in to see the rhabdomyosarcoma doctor yet (Dr. Jennifer Wright).  They tell me it is very rare to have this show up in adults, so the specialists for this cancer are at Primary Children's Hospital (yes, I used to work there!)  I called Dr. Wright's office at 4 pm and she said the the doctor was still collecting all the test results and scans, etc. so she could determine how far along the cancer is and determine a plan of attack.  So, our life is still on hold.

Jake's leg is still very swollen and I am hoping that something will happen very soon to relieve the pressure on his foot and leg.  He still has a "2 thumbs up" attitude (God bless him!).  I think he is still trying to do a few fun things before he is too sick.

On the bright side...I was able to get my windows washed yesterday, Rhett was able to get my 4 wheelers started (He is so amazingly smart!)  I got some flowers planted in my front yard and my peas are ready to eat!

  This morning I was able to get primer on the trim in the hallway downstairs while I listened to some comforting talks by Elder Maxwell.

As I was sobbing on my bed, God told me to trust Him, so that's what I'm going to do.

He told me it was going to be hard...He was right!

Just a little miracle

I guess your prayers for Jake to be healed are pretty strong!  Yesterday was Saturday, the day after Jake's surgery.  He had just gotten out of the shower.
Me:  Jake!  You're not suppose to take a shower until tomorrow!
Jake:   No one told me!  Besides Mom, it's all healed!  He revealed his 5 inch scar.
Me:  Jake, you're not suppose to take those steri strips off until Sunday! 
Jake:  But, Mom, look at it!  It's all healed!

I looked, and sure enough, the scar was closed up like it had been healing for 3 weeks!  I wouldn't have believed it if I hadn't seen it with my own eyes!

So, see, your prayers are working!  Thanks so much for asking God for this little miracle!
Please don't stop!

Jake Update 6/25

We woke up about 4:45 a.m. and took Jake up to the University of Utah hospital to have a piece of his lymph node removed for more biopsy.  One of the nurses told me it would take at least a week to get any results.  I was devastated (the first ones only took 12-24 hours)!  They also told me the operation would probably take a little over an hour.  I'm thinking, seriously!  How hard could this be!  They made us come 1 1/2 hours before the procedure even started.  We were waiting in the room an hour before the procedure started.  I asked the nurse what they were going to do for an hour and she said, "Oh we'll take his vitals and the doctor will come in and talk to you."  So they took his vitals (3 minutes max) then said, "Ok, the doctor will come in and see you in about 1/2 hour"  Apparently, this is standard patient waiting torture...I mean procedure.  If you don't wait for at least 30 minutes that can't bill you for as much time.

The good news is the procedure only took 1/2 hour.  It took him over an hour to wake up, but he is doing fine.  Dr. Nelson said they should know something by Monday and they took 1/2 of his lymph node, froze some and gave the rest to Pathology to start running the tests right away.

I'm happy because we are not at a stand-still any more.  Things are moving along again and we are getting closer to knowing what the treatment plan is.

I apologize for not calling everyone.  You are welcome to call me if you don't want to check the blog.

We appreciate your thoughts and prayers!

Early Morning!!!

Seriously, who would want to wake up to this in the morning!

Called to get Jake's appointment time.  We have to be up at the University of Utah Hospital at 6:00 a.m.!  The good news is, we should be done by 9ish and he won't have to fast very long.  Still, we have to leave here by 5:15 a.m.  But there is hardly any traffic that time of day!  Doing it that early in the morning means they will be able to run the tests earlier and get results sooner!

Jake update 6/22

I don't think I like this post already.  We got the call and well, I don't know how to word this...Dr. Gilbert said Jake has cancer and they are narrowing it down to which one.  With all the biopsy stains they have done, the last set of biopsies they could do turned up with some of the answers they needed, but they ran out of samples.  They are going to surgically remove the rest of the lymph node, but not until Friday. 

A lot of crying today, but, that's just what mom's do.  We'll get through this.  I just need to go to the temple and get my booster shot, then I think I can make it through a few more days.

Jake is still doing ok.  A lot more swollen in the foot now.  A little nervous.  Appreciating the treats he has received.  He has a good attitude.  He let me kiss him on the cheek today, but only because no one was around to see it.  (hugging is still ok, but kissing is crossing the line. lol)

We have an awesome ward and neighborhood and lots of family who love us.  If we have to go through something challenging like this, God has sure blessed us to live in the right place!  Thanks to all who have shown their love and concern so far.  My sweet friend, Emily, (in my primary class) already told me about the camp she went to and that kids with cancer went there, so Jake could go next year!

Thanks for your prayers!  Keep em coming

Jake Update 6/21

Got a call from the Dr. Gilbert.  She said that the stains are coming back negative, so they still don't know what he has or how to treat it.  They are waiting for another set of stains to be ready around 5:00 pm today.  The Lab guy has to analyze it and they have a rush on it, so again, waiting.

Plan B is, if this set of stains comes back negative, is to surgically take the whole lymph node out (which she says is pretty big).  This will be a same day surgery type of thing.  I told her to go ahead and schedule it with Dr. Nelson because usually it takes a few days to get on the schedule.

If I hear something tonight or in the morning, I'll post it.

Please pray for the doctors to find some answers!  They can't treat him until they know what it is.

Thanks for your

Jake Update 6/18

Just talked to the doctor.  She said that the biopsy results will not be done until Monday and she would call me by 3:00 pm with whatever information she has (she said that about today and I just heard from her (5:30), fyi).

Good News/Bad News

Just got a call from Dr. Gilbert.  She said that she got some of the biopsies back.  The good news is that they have ruled out Lymphoma.  They are still doing more stains.  We will not have to go in to see her tomorrow.  The bad news is, they still don't know what it is yet and some of the tests may not be done until Monday.  She will call me tomorrow with whatever results she gets.

Still more waiting!

Biopsy

We had an appointment at 11:30, but it was changed to 1:30 this afternoon.  We first saw a Dr. Nelson, who was an Urology Surgeon.  We supposed that he was going to do a biopsy, but he took some history, checked Jake out and consulted the Radiologist on the CT scan.  He couldn't do a biopsy today or tomorrow, but as a consolation prize, he made arrangements for us to get into the Radiologist who could do a biopsy with a needle.  Jake finally got in to the Radiologist around 3:15.  He was in there for an hour, only used a local sedation.  They took three good biopsy samples from a lymphoma in his groin area.  The guy from the lab was there, said that they were good enough specimens and he will have the results Friday morning.

I was able to talk to our Oncologist on the phone, Dr. Heather Gilbert.  She works in the Huntsman Cancer Institute.  She said she would call us before Friday if it was really bad news.  Otherwise, we will learn the treatment plan on Friday morning.  She really couldn't give me any more information until the biopsy is analyzed.  She was very nice and answered my questions as best she could with the information she had.

For now, Jake has to take it easy for the next couple days.  His leg is still swollen and it won't go down until he starts getting treatment.  One of the lymph nodes is pushing against one of his arteries and it's not letting the lymphatic drainage out of his leg.


That's all I know for now.  I'll update again on Friday.

Thanks for the prayers!  Keep them coming please!

The "Not so Good" News

Jake has been having some swelling and went to the doctor last week to see if they could fix it. They gave him some antibiotics and sent him home. He went back for a check up yesterday because nothing was better. They did a CT scan at 3:00 pm. He got a call this morning that he needed to come in asap and to bring his mother. I was on my way to racquetball and asked if I should come right back. He said he needed some time to get ready and play and we would go when I was done. Well, after one short game, I was done!

We met Dave at the University of Utah Hospital and talked to the Urologist. He told us that the CT scan showed a tumor by Jake's bladder and he has enlarged lymph nodes all up and down his spine and down his legs. His right leg is really getting swollen!

He goes in for a biopsy tomorrow at 11:30 a.m. I don't know how long it takes to get the results, but we will post it here when we know.

Jake is taking it all in stride. I asked him what he thought on the way home. He said, "Dang!" That's a bummer! He's not depressed or upset...yet. We're just going to take it as it comes and do what needs to be done.

Thank you for your prayers!

Love to you all!