A cute story....

First, I apologize to all of you for having to look at those weird letter/number formations for a verification that you are human...I didn't realize that was on my blog...I have removed it.  I feel your pain with trying to figure out those verifications, I too have given up leaving a comment after 2 or 3 tries...very annoying.  So I hope from now on you will not have to deal with that, but please let me know if it is not working.

Cute Story:  Dina shared this with us yesterday:  She told Jalen (he is 5) that "Mommy" is sick and the drugs she has to take to make her better will most likely cause her to lose her hair.  He says, "But how will I find you?"  (Edited to add a thought:  Scott was wondering if Jalen didn't understand the "losing the hair" part of the story...so if her hair was "lost" then maybe mommy would be too...so how could he find her...gives us something to think about from a 5 year old way of thinking about losing things!)....oh and Dina's response to his was something like this:  "Pretty sure I am going to be the only bald mommy in this house!!"

Are you laughing?  OMG, that one I must remember.

You know, to look at Dina you would not know she is filled with cancer in her lymph glands...she still has her radiant smile, her beautiful blue eyes, she is still slim and trim (envious here *wink).  And even bald I think she will be beautiful because she is beautiful on the inside...just the way God made her...in His perfect Image!

Yesterday she went to Ellie's volleyball game at St. Anthony's in Tigard, she had not seen Ellie play yet as I took her last week.  Scott too wanted to see Ellie, so we went as well.  Joy, Jamie's aunt came and gave her support and with just a few points left in the final set, her MIL came with Jalen, Jake and Alexa (his cousins)...oh I better interject here that Jalen had a soccer game and that is where his daddy was and he scored 4 goals...(was quite proud of the fact that he didn't "pass"...just ran it down himself!)  I think his daddy is going to be having a talk with him...After the game we all went to Red Robin for lunch, Dina and I shared a chicken wrap...and she ate it!  (I mention this because she has not had an appetite and she had lost 4 pounds in the 11 days between her oncologist appointments).

I guess yesterday was an eating day as later the Iacolucci side of the family went to the Olive Garden to celebrate Caleb turning 13....and again she ate some pasta with veggies...not a lot, but some...so it is all good.

I think I mentioned already that she will have a "port" in place on Tuesday, she will have a bone marrow procedure on Wednesday, and on Thursday she will have an echo cardiogram along with a few other tests.  Then she will be set to begin her chemo.  The doctor talked to her about being in a study and she agreed that it was a good thing to do.  Just a couple of downsides:  1.  more visits to the office during the week; 2. perhaps another side effect like diarrhea (which she will already have from one of the other chemo drugs)..  The plus side of it is that she will be monitored very closely, a few more tests that will follow the process of eliminating the cancer...she felt like it was a win/win for her...and more people to be there following her progress every step of the way and being on top of anything that looks out of the norm.  She actually doesn't know if she will be accepted, but her type of cancer makes her the perfect candidate for this clinical trial.

Trust in the Lord with all your heart,
   And lean not on your own understanding.  Provers 3:5

Thank you for following Dina's journey through this blog.  And THANK YOU ALL from the bottom of my heart and Dina's too for all your faithful prayers.  The support is incredible and that alone is uplifting...to know she means so much to so many people is really humbling and something she can draw strength from...so my friends and family, WE ALL THANK YOU!

The Final Diagnosis

I am sorry to keep you all on pins and needles with the news from Dina's appointment.  It has just been a lot to process...a few of her friends stopping over to see her, but she and Jamie had gone to his parents to give them the news, so they came to my house to find out the report.
 
In technical terms it is called "Diffused Large B Cell Lymphoma"...it is Non-Hodgkins...we viewed her PET Scan and her spleen was very black and very large, she had lots of other black areas...on the sacrum, in the back along the spine, her neck and maybe a small one in her groin.  It is considered stage 3 with a bit of Stage 4 too...probably because of all areas of her body effected.  But, it is not all bad, well, yes it is bad that she has this, but really fortunate that she had the pain in her lower back to lead to this diagnosis.

And the doctor says 70 % cure rate...we are going with this and full steam into treatment.  Next Tuesday she will have a port put in.  On Wednesday she will have a bone marrow procedure.  Thursday she will have an echocardiogram and a few other tests.  Then she can start her chemo treatment.  She will have 6 treatments 3 weeks apart...about 4 1/2 months.  The first treatment will take 6 hours, the next ones closer to 4 hours.

Other than her back hurting, she doesn't have any other symptoms.  The doctor thinks that within two weeks of getting her first treatment she should notice marked improvement in the pain in her back.  That is great news.  The doctor warned her about losing all her hair...probably rather quickly...so we plan to go shopping for HATS next week, while she still feels okay (pre-chemo).  She has been given all the prescriptions to help her cope with side effects...constipation, diarrhea, nausea.  He wants her to keep a  handle on the pain, his goal is for "0" pain...she does not have to be a martyr and cope with discomfort...he prescribed oxycodone.  He warned about fatigue and appetite loss saying it is most important to drink a lot of fluids, gatorade is good because it has electrolytes.

The next 5 months will be a "New Kind of Normal" for all of us as we live with this and handle life with a young family...a family who is involved with lots of activities.  Ellie is playing volleyball in a fall league, playing basketball in a "pick-up" league, also doing cross country after school.  Lily is in girl scouts, stays after school one day a week for choir and is also playing volleyball.  Jalen started soccer this year...what a hoot he is to watch...!

I may have mentioned that I started knitting a "Prayer Shawl" for Dina as soon as we had our first oncology appointment.  I finished the shawl Sunday night and brought it with me and placed it around her shoulders in the doctor's office today...I told her every stitch was said with a prayer...a prayer for healing and comfort.  I had to back stitch a few as the "count" got away from me..*wink*, but I  prayed the Lord's Prayer, the Hail Mary, and the Glory Be, over and over again.  I did stop a few times and closed my eyes and said a private prayer to God (I believe I may have done some begging, too!).  I listened to my Rosary CD also and that was  really calming to me and I didn't make as many mistakes when I listened to the CD...

I think that now I will start blogging a little more regularly and post about her days, how she is feeling etc...as I want this to be a diary and a place to remember all these details that I know one day I will forget.

Thank you for staying with me on this journey and most of all thank you for all your prayers...they are working, truly I believe God answered mine...


Here is a Caring Bridge site that a friend of Dina's helped Ellie start.  Ellie is posting little comments about her mom and keeping everyone informed about how she is feeling.  If you would like to leave a comment for either Ellie or Dina, you can do so on this site.  You may have to sign in for an account, but it is an easy process and you can look at pictures that Ellie has posted and read the comments from others.  I am sure Ellie and Dina would both love to hear from you.  This is an awesome tool that will help Ellie feel connected to her mom during this process and that she is doing her part in supporting her mom.

News update on Dina

Dina had her chest and neck CT scan and also the PET scan last Wednesday, then on Thursday she saw the ENT doctor who just happens to be a golfing friend of both Scott and Jamie (the oncologist used their names when making the appointment) and after examening her, asked if she would like to have the biopsy sooner...she of course said YES!  So he did it on Friday, yesterday, Sept 21.  She had two enlarged lymph glands and he was able to extract one, not the biggest which he would have liked to have gotten, but it was too close to her lung and too deep, he didn't want to risk a collapsed lung.  He felt like he got a very good sample...so because he took this biopsy 5 days earlier, they are now able to go back to the oncologist next Friday...which is also 5 days earlier.  All of this means less waiting time to start a treatment plan and that gives all of us a little more peace of mind.

The other good news for Dina is the visit with her gynecologist...the doctor was very confident that there was not any reason for concern with her extra bleeding for a month.  The doctor said it is very common to have bleeding after having an injection of steroids...so Dina has been given a prescription of progesterone to help flush out her system and get it back to normal...that alone made Dina feel good.

Now because of the erosion of her sacrum, she really cannot be on her feet too much, it just hurts too much. We are all encouraging her to take this time to rest her body, to stay off her feet as much as possible and let everyone else take care of things.

She is so blessed to have many many wonderful friends ready to do ANYTHING for her.  Two friends from Seattle came right down and stayed for several days just to be here for her.  Em and Jenni, YOU are the BEST!  One good friend started an online "Meal Train" and the site has been passed to all our bible study ladies, MOMS group from church and all her friends...an Ice Chest is on her front porch and people are dropping off meals on the day they signed up ..she gets meals 4 days a week...and that burden of preparing and caring for her family is now left to all  these hundreds of awesome ladies...She is truly blessed and she knows it.  She is just surrounded by goodness and love from many.  And this site is not inclusive to just meals, you can sign up for help with getting kiddos to activities, pickup - drop off, doctor's appointments etc...anything she might need help with, she can get it.  Thankfully she also has a wonderful family and sister who is there for her and as Lacey said, "I am on it"...we want her to heal and not worry about the business or anything but staying positive and nurturing herself back to health.

So I guess that is about all for now...We will have all test results back when we see the oncologist on Friday and I have no doubt that he will have a plan in mind and will be ready to start the treatment to eliminate this cancer.

Psalm 29:11  The Lord gives His people strength, the Lord blesses them with peace.

She looks beautiful even in a hospital cap (before biopsy)

resting after biopsy...I am knitting her prayer shawl and have a rosary CD playing...very peaceful

Psalm 29:11 The Lord gives His people strength

We must turn to God for strength...to give us His love to sustain us through this journey.  The oncologist appointment was not good news, but not hopeless, so I am holding onto that thought.

First Dina's spleen was massively enlarged (oh...I don't think I like that word "massively"...that kind of scares the crap out of me.)  And there were other enlarged lymph nodes in her lower back.  The doctor asked if she felt any lymph glands in her neck, or groin...she shook her head NO.  But when he physically put his hands on her, he said her neck glands are enlarged, but not her groin and not under her arms.

Even without doing a biopsy he is 100% sure it is lymphoma...the biopsy will determine what kind of lymphoma...so we start with baby steps and get more information to see what we need to do to fight this battle.

Last week after the ultra sound showed the enlarged spleen and the doctor ordered the CT scan for both the upper stomach region and the lower pelvis area (because of her piriformus issues) he said the two were not related...Well, guess what?  They are totally related and the Piriformus Syndrome is not what she has been dealing with at all.  She has a lesion on her lower spine...this lesion has been eroding her sacrum bone and that has caused all the pain she has been experiencing for the last four months in her back and lower legs.

Can you imagine how long this cancer has been in her body?  Like how long before it finally "fractured" the bone enough to cause such pain?  That is scary...but we must move forward and not look back.  We must stay positive...above all else keep the positive thoughts and the will to conquer this cancer.

The doctor was fabulous, all four of us:  Scott --(once again this oncologist asked Scott if he was a doctor...he is the BEST to bring with you to the doctor or hospital, he just knows all the questions to ask, ones you would think of, but others that you wouldn't think until you walked out the door, and yet again more questions that you wouldn't even know to ask), me, Dina and Jamie all agree that we like him.  He was a great listener and because he does this every day, he laid it all out for us and how we are going to proceed to fight this....and he had NO doubt in his mind that we can fight and win this.

On Wednesday, she is going to have a chest and neck CT Scan and also a PET Scan.  On Thursday she is going to see the Ear, Nose, Throat Specialist who wants to have a physical exam before doing a biopsy.  On Friday she is seeing her OB/GYN as she has been bleeding every day since August 16.  Next Tuesday she is scheduled for her biopsy and they will take a lymph gland from her neck (there was a cancellation....praise the Lord)  One week later she will be back in the oncologist office and all the test results will be back and a plan of action will be put into place.  Meaning chemo most likely ...he says the bone will heal itself after the lesion is killed off.  October 3 is the date with the oncologist...then we will know what kind of lymphoma this is.

I don't know any more, I know emotionally she is a wreck as is Jamie...the two older girls know a little...Ellie deals with this in her way, which is kind of making jokes or being "flip" with comments, but then in the quiet of her room she breaks down and cries.  Lily who is 9, just looked at Dina and said, "It's okay Mommy God will take care of you"....

Dina has a fabulous support group...her two best friends from Seattle both came down this last weekend, they didn't overlap their time, but they were both here for her...Yesterday her friend stayed with Jalen as we all went to the doctor appointment and she got Lily to her volleyball practice, went back to the school to get Ellie and took her to her volleyball practice, then brought them home...what fabulous friends she has.  And of course her sister will do anything for her...help in any way.  I think more of a burden will fall on Lacey in keeping the Yogurt Shacks supplied and running and the Papa Murphy's too...but she is willing to do that.  What she said to Dina was:  "I'm on it"

So we will all pitch in and help and we just ask for prayers...prayers for healing, prayers for strength and prayers for comfort...Thank you all so much

Prayers Needed

Hello dear friends and family.  I know that I have many dear followers of this blog...it is my way to "remember" all the wonderful events in my life (and sometimes the not so wonderful events...like deaths).  But today I am going to ask for your prayers for my daughter Dina.

I have not written anything specifically about what has been going on with her, but now we need all of our Prayers Warriors to help us get through what is happening in her life....and therefore all of our family.

The beginning started last May when her family was in Disneyland for Jalen's 5th birthday, they were there for three nights and four days.  Now you know there is plenty of walking at Disneyland...one could easily do 10 miles + a day and that can be exhausting.  The last morning when Dina got up she had terrible shooting pain down her leg and then followed by numbness.  When she got home she saw the doctor...he was not able to manipulate her because her muscles were so tight.  I do believe he gave her some muscle relaxants but it really did not help and with three children and 8 stores to take care of, she couldn't be a 'zombie' all day...so she didn't take many of those  pills except at night to help her sleep.

She continued to see the doctor trying to figure out what was going on...she could barely walk and was in just so much pain...they did an Xray and that did not show anything, which when she got the news she burst into tears thinking that was not a good resolution, because it didn't help her in getting better.  After more exams and sending her to a specialist it was determined she had "Piriformus Syndrome"...now I am not medically intelligent by any means, and you may want to google this yourself, but I can give you the "gist" of what it is.    Basically the piriformus muscle is a big deep muscle, so even physical therapy was not helping.  The Sciatica nerve, which is the longest nerve in the body runs through this muscle.  If the muscle goes in spasm it compresses on the sciatica nerve and causes terrible pain in the lower back, buttocks and down the leg.

Finally on August 16 she had an injection directly into her Sciatica nerve (not a pleasant experience) but she started to feel some relief in that she could bend forward now without much pain, but her hip, buttocks and legs still ached and throbbed.

Now I am going to bring you up to date...after one month from the first injection of cortisone in the sciatica nerve she went to see the doctor hoping he will recommend another injection but this time in the piriformus muscle itself. (During this time she has had PT twice a week and not getting a lot of relief)  And to add to this grief, she had been spot bleeding for this month...then she broke out in some weird welt/rashes on her body.  So she saw the doctor and he did a physical exam of her stomach etc.  (the rash he thinks is contact dermatitis...possibly from being on a boat in Coeur d'Alene over two weeks ago!)

The doctor sent her for an ultra sound and then within a few hours he called and asked to see her and Jamie at either her house or the office, whichever would be most convenient for them.  That totally sent her into panic mode.  And as it turned out, Jamie was back up in Coeur d'Alene golfing at Gozzer with 7 buddies...so Scott went with her to see the doctor...the ultra sound showed an enlarged spleen and lymph nodules on her spleen so at this point he is diagnosing lymphoma.  She had blood drawn and she also had a CT SCAN for both the spleen area and also the piriformus area...she sees an oncologist on Monday afternoon.  We are trying to stay positive and praying for the best...and according to the doctor he is hoping for lymphoma as he says it has a 90% cure rate...

I am just writing this to ask for prayers during this very emotional and distressing time for all of us, but especially for Dina and Jamie who are living with this...BTW...Jamie did fly home Thursday night (he had a call from the doctor that told him to come home and be with his wife!)....of course he was a basket case on the golf course anyway and was not having fun!

so THANK YOU family and friends for your prayers and I will keep you posted with news after we hear more on Monday after seeing the oncologist...

This is Dina and her family in August up at Gozzer in Coeur d'Alene...her family came to the Iacolucci reunion last year in 2011.  thank you for your prayers...