Saturday, February 20, 2016

Working Our Way Through February

Dear Family and Friends,

These past few weeks have been good in our home.

For what it's worth I apologize if I am not keeping up with these updates often enough.

The day of my last post was on the morning we went to bring Mandi home from The Huntsman. That was a great day that turned into two, due to a couple long infusions during her last couple cycles.  It was so good to see that while away from us, she was very well taken care of, and still the upbeat and caring person that we all know her as.  It was odd to the Doctors when they are on their morning rounds, and the first thing they hear when entering Mandi's room is "how are you all doing today?"  The Doctors respond "We are fine! But, that is what we are here to find out about you!"

We though it would be a good idea to share the beginnings of how this adventure all began.

In October 2015 Mandi was having some symptoms that were not normal, such as chest pains, some difficulty swallowing, some tingling in her arm, shortness of breath, difficulty sleeping, and finally a cough that made our supply of cough drops seem never ending.  During this time she had made multiple trips to the doctor trying to figure out what was going on, only to be sent away with adjusted prescriptions, many of which she did not fill.  This time was very trying for her, because she would leave the appointments thinking this was all in her head.

It was Sunday morning January 10th when a trip up the stairs left her short of breath.  I was out of town, and called to see how things were going.  When she answered and told me that she was having a hard time breathing, we decided she should go to the emergency room right then.  I will probably not be able to explain this experience very well, since I wasn't there with her.  Which does bother me to this day, but I will do my best.  At the emergency room she was admitted and started through some of the same tests that are standard at the ER.  It lead to a CT scan, and that is when the mass was discovered.  The mass is about the size of a baseball and is not attached to, but located near the top of her heart, lungs and esophagus, all of which we feel is due to the symptoms she has been having.  This news as many can imagine, and many that know is very scary.  We feel that even worse is that you do not know what the mass is.  This began our process of wondering and waiting.

That next day we met with a Doctor to consult what would be our next step in figuring out what this mass was, and on the 12th went to McKay-Dee hospital to consult a cardiovascular surgeon due to where the mass was located.   This was the first time we were able to see the CT scan and have the doctor explain what we were looking at, but still did not know if the mass was benign.

We scheduled surgery on the 15th to perform a biopsy.  Due to the location, we understood that it was not safe to remove the mass, and that a piece would be sent for further testing to determine whether or not the mass was benign.  The surgery went well without complications,  There was about a 3" incision made in-between a couple of her ribs.  Her recovery was a bit rough, the anesthesia made her nauseous and she was dizzy.  That week of recovering, and waiting seemed like one of the longest weeks on record.  During that week we celebrated our 17th wedding anniversary.

Finally on the 22nd the results from the biopsy were sent to the Doctor.  We had been advised to ask any question that we could come up with.  In that appointment is where we finally were told that the mass had positive cells that were non Hodgkins lymphoma, and that it would be necessary to start some type of treatment.   While asking questions, the Doctor made a call to a surgeon to see when it would be possible for her to get a port for further treatments.  He was available, but only in his office for a short time that day.  So we rushed off with a lot of questions unanswered.  We met with Dr. Hansen, a family friend and former ward member who was more than helpful in his counsel and kindness.  Another surgery was scheduled for 25th and we headed back to find out treatment plans and other details related to our questions, only to find the staff works half days on Friday and we would need to wait until the first of the following week "MORE WAITING".  We were able to schedule another CT scan that day and also a echocardiogram.

On the 25th we went in for another surgery to get the port she needed for treatments.  Mandi's spirits were up.  While getting ready for surgery we learned of close Family and Friend relationships with many of the nurses and staff involved in this procedure.  I feel this was a relief to Mandi knowing there were not just strangers looking after her, but people that had genuine care for her and her well being.  This surgery went well also.  While she was in surgery, I went to get the results, and more questions answered, set up appointments with additional Doctors at other hospitals, ETC.  That is when we found out more details of the diagnosis and, of the treatment plan that was recommended.  We found out that the echocardiogram results were good and that her heart would be strong enough to withstand the treatments.

Finally getting questions answered!

I remember it being almost impossible to answer the questions of Family and Friends when we didn't have any answers as well.  We were so glad to finally be headed in a positive direction towards healing.

On the 28th we headed for Salt Lake to get our second opinion.  Another treatment plan was recommended and the details of their treatments were explained, of which we are currently in the beginning stages.

Life at our home these past few weeks has been pretty normal, with all the things that come with life in a what we call "dysfunctional family".   Having Mandi home after being gone with her first set of treatments has been good.  It helps us to realize how much she does for us.  Some of the side effects that were explained, due to chemotherapy have been true.  While she is home there are scheduled appointments to get lab work done to check that her blood counts are where they need to be,  there is a long list of meds and one shot she is required to give herself in the belly (A bit painful but very helpful). This last Wednesday she finally was tired of the clumps of hair falling out and we broke out the clippers. She has learned that a nap during the day will save her energy for the last part of the day, and that she does not need to do everything she is used to, and that relying on others for help is okay.  She has always had her same upbeat and smiling personality, except one time and that's okay too.

The treatment plan has her scheduled to start the second treatment this coming Thursday and hopefully home the following Monday.

The weather here is starting to warm up so Mayci and Deaken are starting to roam the streets again.  "Beware"  Harli and Taeden are both growing up and it is fun to watch their personalities blossom, even though there is still some weeding to do. Taeden and I went with some friends for a snowmobile ride Monday for valentines day.  Mandi was supposed to go with me, but was not up to it.  I was glad to have Taeden there with me, even though the weather was not great and we took a couple wrong turns.

Our Family could never say thank you enough for the kindness shown and felt by all those who have helped where needed.  We know that there are more situations than we are aware of, that people are in need of a caring thought, a smile, or just to know they are not alone in their struggles.  Our hearts are with those people and we should take moments daily to remember them and think of ways to lift their spirits, like you have done to ours.  A big part of this life is about developing Charity, the pure Love of Christ, that we will be more like him and be filled with this love is our hope. (Moroni 7:48)

With Thanks and Love,

The J&M Poulsen's












Saturday, February 6, 2016

First week of treatments

Dear Family and Friends,

This past week Mandi started treatments.  I will try to explain in the best way I can this first weeks accomplishments.

Monday afternoon Mandi had her first appointment to get a pet scan.  First we went to the nurses station and accessed her port, for blood draws, and the IV for the medication.  And then she went directly to the radiology for the scan.

While in one of the waiting rooms a lady sat about 10 feet away, and Mandi started choking on her smells.  I'm not sure how this will effect her career as a sentcy consultant.

During that time I was shown around the hospital meeting with doctors, nurses, and insurance, and trying to navigate my way around the hospital.   After the scan was complete, we went to the food bistro to get a bit to eat.  It was good to see Mandi eat a pretty good meal where she has not had the appetite to do so lately.   We were delaying a bit, due to the fact there was not a room ready for her when I went to see where she would be staying during her treatments.  After her meal we headed for the patient rooms, and they had one available.

We understood they were starting treatments that Monday evening, but due to timing and some other details, we were informed that the treatments would start the following morning.  The doctors and nurses took some time explaining what to expect during her stay.  Things like vital checks every 4 hours around the clock, blood draws each day, the medication that will be used and the schedule that they will be infused.

Mandi was able to order french toast with fresh strawberries and cool whip,  and got a pretty good rest the first night besides the 4 hour vital checks.

Tuesday was the first 12 hour infusion, which was explained as what I would call the demon.  The doctors and nurses told us that people commonly react to this medication, and that we should expect the possibility of any number of reactions, and that during this  infusion vitals would be taken every 15 minutes which took the majority of that day.  This drug attaches to the bad cells allowing the treatments to be more effective. During this first cycle the only reaction was a slight fever towards the end, and I think it was caused because the room temperature was to high.   But I was probably wrong.  Regardless she did have the temp turned down a couple degrees.  This possibility of reaction is mainly for the first treatment and the concern should not be as high for future treatments.

During the day we were visited by many specialists from doctors and therapists, to nutritionalists,  which was very comforting to know that there was not one rock unturned.  And due to our lack of understanding all the details of this disease, we know we are in the right place for Mandi's treatments.

Tuesday evening, she started a combination of three meds, which is a 24 hour continuous infusion for four cycles, while along the way making sure she is hydrated.  She had lost about 25 pounds and is feeling the fluids and steroids are replacing the loss.  She is not as happy about that =(

Thursday Deaken and Mayci had parent teacher conference, and we are proud of their efforts in school.  Taeden increased about 20% on his math grade, which is amazing.  Wednesday he went snow  boarding at Cherry Creek Peak with his YM group and had a crash.  Hopefully it doesn't affect the learning portion of his brain.  We love that kid!!!  Right when he got home we were in the middle of a lizard hunt.  Apparently Mayci can not resist feeling the texture of lizard skin, and the lizard was less than willing to let her.  As she went in for the feel, the lizard intercepted by biting her finger.  The reaction of pulling her finger away while the lizard was still attached, ejected the lizard from it's home, and started the chase.  Since Taeden does not currently have a door on his room due to another incident, the lizard escaped a very frantic little girl who was breaking a promise that was made earlier in her life.  Glad that's over!  Harli is also here, helping and planning the next event with her friends.  This past week has been a frantic one, and we thank all those have helped where needed.

We were hoping we would have Mandi back at home Saturday evening, but the the 3rd cycle took longer than expected and was not started till around 10:00 pm Friday.  She has been a bit tired, but her spirits are up and thanks to FaceTime we have had chances for our family stay connected.     Thank Apple!

As of today we feel the process towards wellness is moving along.  Minus a couple fevers she has had, it is good to get started on the road to being healed.  We are not sure what all to expect as we get closer to the end only what doctors and nurses had told us.  We know that Mandi will have a low immune system and fatigue, and the doctors and nurses have told us the importance of a clean house.  Which means washing hands a lot,  and doing all we can to keep bad germs out.  After talking to her today, it sounds like our already high level of cleansing will be stepped up a couple notches.  The kids are pretty excited.

We are very excited to have her back tomorrow, and I know she is excited to squeeze her babies.  Hope I get one to?

Thanks again to all our Family and Friends who have shown concern, helped where needed, put names on lists, and included Mandi and our family in their family and personal prayers.  This is an experience that we can not make it through without the help from others.  We truly feel loved, and want you all to know that feeling is mutual.  Thank You!!

     We hope this will not be an unreasonable request, Mandi has asked that this link is not attached to any social media accounts.  We hope that this blog will be kept within our circle of family and friends.

Love, The J&M Poulsen's