Dina Update

It has been a little difficult keeping up this blog I know I tried to reach out to many to go to the Caring Bridge site to read all updates that the girls post concerning their mom's progress.
You can go here to sign in and then get notifications of any new blog posts:  https://www.caringbridge.org/visit/dinasnook

But since you are here, I will fill you in!  She is currently back up at OHSU doing the infusion.  She went in last Wednesday and will most likely be able to come home on Monday.  It is a longer stay this time because it is new drugs and some of them have to be given 24 hours apart.  they are also flushing her with a lot of fluid.  Yesterday she told me she gained 10 pounds in 2 days from all the fluids.  the fluids are to help get rid of the dead cancer cells and a very important part of this treatment.

Her hair started falling out last Friday, she said it was making a big mess in the hospital room, on her pillow, in the bed and all over the floor. She was happy to get home and have the kids help shave her head.  She cried.  But her sweet sister in law had a friend come over on Tuesday and give her false eyelashes and boy did her spirits lift and she just felt good about herself, even without hair.

Attitude is half the battle and if this little thing like eyelashes can make her feel better, than I am all for it, I told her to sign me up for a month to help pay for them.  But I just found out the young lady that did them wants to do it for free...it is her way of giving back, especially after she met Dina and came to love her as much as we all do!

She had another lumbar puncture, that is taking out fluid of the spinal column and replacing it with chemo...once again it came back negative for the disease.  Apparently those little burkett cancer cells are clever at finding hiding places...so another important step in eliminating this cancer from Dina's body.

They are also pumping her with lots of fluids to flush out all the dead cancer cells.  She gained 10 pounds in two days!  And she just felt yucky all day yesterday from being bloated and having to go to the bathroom all day long.  Small price to pay for getting rid of those bad boys!

The good news?  After this treatment, she is half way done with chemo!!  She will go back in the end of this month, in a little over two weeks, then she will have two sessions close together and then this long one again.  Her last chemo is scheduled for March 20 (if all goes according to schedule) and she should be released on the 25.  Then she has to wait a month before doing a scan to see how things are looking.

They were concerned with one of the lymph nodes on her appendix, thinking that as it shrunk and released fluids it would feel like a ruptured appendix and she would need to rush to the hospital.  They haven't taken any scans to see how anything is looking.  I think Dina is hoping she is in the hospital when/if that happens!

I think the drugs and side effects have all improved since the last time in 2011/2012 when she had chemo.  She has had nausea, but not thrown up!  The one major pain that she did have last time is the bone pain from the white cell booster shot.  Every time after chemo she has to give herself the shot for several days and it causes severe bone pain, everywhere, including her teeth and jaws.  The chemo kills good cells as well as the bad ones, so they need to give her the booster shot to increase her white cells to help fight infection.

I would say Dina feels hopeful and so touched by the outpouring of prayers.  She definitely feels touched by angels and has had God wink moments during this bout of cancer.

Thank you all for your support and your continued prayers and for any that purchased the Team Dina gear (not necessary at all!, prayers are the most important!)  If you did buy a Team Dina shirt, please take a picture and send it to me, as Lacey is going to put a collage together of everyone that bought a shirt in support of Dina.  I think the last day to order from Kyle is Monday the 11th.

Scott and I took Lily up to see her Mom on Thursday night:  I snapped a pic of the two of them in her bed!

Here is a picture of her family just prior to her losing her hair:

The back of the shirt has this bible verse: "Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go." Joshua 1:9

Thanks for stopping by!  Heart Hugs to you all!

Dina's story continued....

What prompted me to write in this blog again was my daughter Dina.

If you may remember back in 2011 she was diagnosed with stage 4 lymphoma and proceeded to have chemo.  She ended her chemo in February of 2012, it took several more months for the last bit of cancer to leave her spleen, then she was considered cancer free.

This last spring she discovered she had a hernia by her belly button, it was fairly small and not necessary to remove it, but she noticed when she got a cold and coughed it really did hurt, so she decided it would be best to have it removed.  She scheduled the surgery for December 12.

About the first of November both of her ankles got very swollen, she saw her doctor and he diagnosed Achilles tendonitis and he referred her for some PT.

That didn't help a lot, so he gave her prednisone for 5 days and thought she should see a rheumatologist even though her blood work came back negative.  The prednisone really helped take care of the inflammation.  The rheumatologist diagnosed her with Psoriatic Arthritis.  The doctor gave her a prescription for prednisone to have available if she had another flare up.

The two drugs that are often used for this arthritis has side effects and they say "May cause Lymphoma"!!  NO WAY was she going to use that drug, she said she would rather have swollen joints!  But when she took the prednisone, she had to postpone her hernia surgery.

Throughout the fall months her stomach was bothering her a little bit, some days not at all, others a little bit more.  She thought it was probably the hernia and was thinking she needed to reschedule for the surgery.  However the day after Christmas she had severe stomach pain that doubled her over and had her in tears.  She went to the ER and they did a CT scan and the ER doctor told her it looked like a recurrence of cancer. Her stomach lining was all inflamed and she had enlarged lymph nodes. That sent her into a real tailspin and she was in tears for days.  Her oncologist wanted to have a PET scan and that took 8 days to get scheduled.  The PET scan showed the cancer is back.  It looked like a mass in her stomach, but it was actually several lymph nodes clustered together.  She has another spot under her left arm and it is deeper into her body. Today she consulted with a doctor to have a biopsy and remove the hernia.  The doctor assured her that it would be a pretty normal procedure, she should be able to leave the same day, which is next Tuesday January 8th.  Unless she has a 'bleeder', then they would keep her to monitor her. Her oncologist told her this would be a harder chemo than the last time, and he knew last time it kicked her butt (his words!).  He was shocked that the cancer came back.  It usually takes 10 days for the pathologist to get word back to the doctor so a treatment can be put in place.  She is guessing with all the other protocol to follow, it may take 4-6 weeks before she can start her chemo.   She kept this from her kids until she knew conclusively that the cancer has returned.  She just told them on Thursday Jan 3rd.  They are ready to support their "Mama" and help her "kick cancer's butt" (their words!).

I know this is going to be really hard on her and yes she is strong and is ready to fight this, but I sure remember how awful she felt, how nauseous she got and how the first week after chemo she was mostly in bed.  She had chemo every three weeks.  We don't know yet how long she will be doing chemo.  I just wanted to ask for prayers for her to have the strength to get though this, to fight it and to remain positive.  The has been hard on Jamie as well, he is doing what he does best:  calling in favors with doctor friends to  do everything they can for her and to do it quickly.  They have come through for him, but he is a mess emotionally just as much as Dina is.  Please keep the whole family in your prayers and for Dina to have a complete cure this time and to know that she is not walking alone.  We are trusting God and His plan and praying that she can get back into remission.

This was the main story I wanted to share today, it will be 7 years in February that she completed her chemo and we are all heart broken that it has come back.

While I am here I will share a few pictures of the family from this past year:

 I guess the most memorable for me was the total knee replacement in August, I had 29 staples in my knee, I used a continuous passive machine to keep bending the knee, I had that for three weeks.  I can tell you this was NOT a fun experience, I had to have 2 manipulations and during one of them an arthroscopic surgery to see why my knee kept losing flexion.  Now after 5 months it still is not good, but I am working on it without PT.  I ride my bike for an hour a day and I have a splint that I use to bend my knee.  I will be so happy when I can walk without pain and without limping.

 How about celebrating my Dad's 97 th birthday at Ellie's last home volleyball match?

All the seniors were honored on this night and family members were called out to join her on the court. 

 We had to get a picture with the two girls ! Look how tall my little Lily is?

And here is the birthday boy with his great granddaughters.  He was announced to the crowd as celebrating his 97th birthday...I don't think he heard it or understood what was being said.

Ellie was honored as the Player of the Year for the Three River's League.

The team made it to state and ended up in third place.

Ellie received first Team All Tournament.

And she also was honored with being one of 5 for FIRST TEAM ALL STATE.

She has a scholarship to play at Portland State University in the fall!