A New Journey

A Fundraiser for a Maui Family

The Malkovich family is united in embarking on an adventure for one of their own.
Proud, hardworking and incredibly private, Mike, Laurna, Shaun, Morgan and Sumer Malkovich are doing

whatever it take to allow Morgan, a recent award winning Seabury Hall graduate, an opportunity to undergo a surgery to improve the quality of her life.
Morgan has an extremely rare condition called  CLOVES syndrome which is characterized by vascular and lymphatic abnormalities. Because of the rarity of this syndrome, doctors in Hawaii have recommended that Morgan fly to the Boston Children’s Hospital where there are doctors who have more experience with treating this syndrome.
“I’m ready” Morgan said. “”We have been discussing this surgery with doctors for years, and it is now time to do itl.”
Like many families, the Malkovich family has been hit hard by the economic downturn. Mike, a wood craftsman, has struggled to find jobs as the construction industry has ground to a near halt on Maui. Laurna, entrepreneur and fine artist, has put her dreams on hold to help with the family’s financial stress.
Extraordinarily close, the entire Malkovich family wants to be able to be in Boston for the days surrounding the surgery.
“The medical insurance will cover most of the medical costs, but I recently discovered that when the hospital told me that Morgan would need to stay in  Boston for about a month after the surgery, it was not in the hospital, but in the area.” stated Laurna. “Our family does not have the financial wherewithal at this time to manage a modest place where we can have privacy and a healing environment for Morgan.”
To raise the funds necessary to support Morgan’s journey, the Makovich’s have organized a silent auction. This endeavor started out with the idea that Laurna wanted to somehow sell all of her paintings to make this work. As she related her idea to her friends it evolved to where they all enthusiastically wanted to add items to the auction. The auction now has original works by Carmen Gardner, Craig Gardner, Zach Pezzillo, and Dennis Chamberlin in addition to a weeks stay at Kihei Bay Surf, donated by Mark Jesuroga.
The items can be seen here on this blog posting and there will  also be Exhibit of all work displayed  at Grace Beauty Day Spa  on Sunday June 12 from 10:00am – 4:00 pm. The bidding for the items can be done  thru Wednesday June 15th.
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Re- entry in to “life” for Sumer and I has been a bit inundating. We were in a family cocoon for such a long time. That which has now opened. When you abruptly leave something, like your home, jobs etc. for this length of time, there is a lot of  broken pieces that need mending.  My biggest endeavor is income to sustain us and our lives. As we are still not complete with Morgan’s recovery it needs to be flexible work. Housecleaning, yard work, or bookkeeping. Event work such as catering would be great. I am putting in applications around the island and have discovered that it really only works by the”recommendations of others”, “word of mouth” kind of thing. What I do here now requires being flexible for upcoming needs of traveling to San Francisco.

My passion in life and career goals are of course my Fine Art.

I have paintings to sell and are showing some of them here on the blog. If you are interested and would like to see them in person please let me know.

I would also LOVE to do  commission work.

I am praying that  miracles continue to flow until Morgan is home………..

 

 

Sumer and I left Boston on Sat. March 10th. It was very emotional, liberating and surreal. We were going to San Francisco two days before Mike and Morgan’s departure to have everything in order for her arrival. On Monday, March 12th, they woke up at 4:30am to get everything ready for the EMT’s arrival. They arrived on time with the WRONG equipment. The balloon of anticipation and happiness was quickly deflated. Morgan and Mike were told that they were not leaving that day and it might take up to a week before new plans could be made. Wait…….all of the luggage was already shipped……and we were now on the opposite coast. Having Morgan leave Boston Children’s Hospital was a long unknown phenomenon. So this little delay hung heavy with all of us.

Luckily, the case worker and I  were able to get a new plane and equip in just two days. Morgan did leave BCH on Wed. March 14. The travel was a 9 hour adventure from hospital to hospital. Morgan’s positioning and comfort on the gurney left her with about 10 inches between her face and the top of the plane. Yowza. Mike said that the rest of the plane was just as small. He wondered if there was a medical emergency how the nurse and EMT could move around to do anything !!! The flight was long, loud and uneventful. Besides being travel and stress wary they arrived in great spirits and we were so happy to see them.

Sumer and I had spent the day at California Pacific Medical Center, getting her room ready for their arrival. Her room was a suite compared to anything we had at Boston Children’s.( Morgan had 10 different rooms in the 8.5 months we were there.)  It was huge !

I stayed with Morgan for the first week, giving Mike some space to familiarize himself with San Francisco, before Sumer and I left for Maui. It was a time where no one knew us and the routines we had established, so it was a big week of change.

Change…….a concept that we normally shy away from,  try to avoid, do slowly, or not very often is part of every day life in a hospital. It is in continuous motion, a moment to moment occurrence. Working at embracing it gracefully is worth the awareness.

The Physical Therapy Team is fabulous. They have let Morgan be the driver in her progress. For the first time in this journey Morgan has a sense of being in control of her life. Most of the journey was fueled by medical complications,which left her with little control over her physical undertakings.

 

I have a saying that has been my mantra for the past 9 months

“ Everything, EVERYTHING unfolds exactly the way it is suppose to.”  This has gotten me through the surgical waiting room, the watching of the monitors, the healing of the surgery, the not knowing where we are going to sleep, shower or eat. All the miracles that have gotten us to where we are today.

ImageImageImageWow……as you can see from the title of this post we are leaving Boston and heading to San Francisco. Morgan has been very busy healing and moving forward. She has gotten to a place where medically she is stable and working  very hard on the Rehab part of healing. This is the difficult part, as laying in a bed for 8 months can do interesting things to your muscles, joints and body in general !!

We are on our last week here and are all VERY EXCITED to be moving on. Morgan will be traveling with Mike, via air ambulance on a private lear jet. Sounds kinda fun !! And Sumer and I will meet them in San Francisco. 

What a journey this has been. We have met so many generous, giving , kind people. We have spent days not sleeping watching the monitor register vital signs. We have eaten hospital food for 8 months. We have cried and laughed. We have talked story with all the nurses in great length. We have brought Morgans hospital bed all over the hospital and spent many hours outside. We have sat in the Operating Room waiting room 13 times. We have watched Morgan heal. We have put on scrubs every day and taken an active role in her care. We have all, Mike, Sumer and I slept in her room at the same time. We have advocated with the doctors when they were new and did not understand her care. We have all lived a hospital life for 8 months. And we are so happy that Morgan is doing so good and moving on.

We are ready to leave.  AND MORGAN MOST OF ALL  !!!!!!!  I know it will be very strange for her to leave the hospital grounds. 

She celebrated her 19th birthday today !!

We will keep you posted on our trip to the west coast and her new digs.

Aloha

 

Time is a concept that is mind bending to me these days. One blink and a week has passed by. Shaun came for his 6 week school break and he will be heading back to Savannah Georgia on Sunday. It was so great to see him even though we never really did anything but travel to and from the hospital or stores. His presence was fulfilling.

Morgan has continued to stay stable and move forward with the removal of many of the “hospital things” that are unpleasant or confining. Like loosing the daily “shot” of blood thinner and changing it to a pill. Ya know things like that. PT ( physical therapy) is top on the list these days and it is not a favorite of Morgans. Its a lot of hard work. Over and above all the hard work she has already done to get to where she is today.   I am seeing the “Morgan spunk” more and more as she works towards leaving the hospital. We still have no idea when that will be. There is still a lot of time needed on the mobility and pain front.

We must be shinning the Maui sun a lot here, because the nurses all say that the weather here in Boston is very warm compared to years past. It is in the high 30’s (brrrrr) to high 40’s (brrrrr) on many of the days with some thrown in that are in the low 20’s. There have only been some short sighted snow flurries. Last year at this time there had been continuous blizzards. We are so lucky. I can’t imagine it in the teens  ( or below zero) with tons of snow.

We sold one of our cars to help support our need to stay here. It was a very sad loss, but grateful for the opportunity. We have received so much kindness from people during this journey. Truly wonderful. From all the people who help out with what is needed back on Maui to the support here in Boston.I have to keep reminding myself , not to get too stressed out, that it will all just “unfold” exactly the way it is supposed to. With that reminder front and center it makes it easier to stay day to day. ” Go with the flow” we are all experts now !!!

OK… I am done with sleeping on the vinyl chairs at the hospital . Then I look over at Morgan , and I am reminded that she has hardly left her bed in 6 months and then I get a new perspective. But I guess its OK to whine a little ??!!

I want to wish EVERYONE  a very HAPPY NEW YEAR ……filled with Joyous Fun, Great Wishes and True Happiness.

Because that is what life is all about…..  !

 

 

WE  are cruz’n right into December…….

The hospital staff said that this is the warmest winter that they have had in a very long time. Ususally by now there has been several snow storms. Its been in the upper 50’s and 60’s most of the time, with a few cold nights and mornings. We are very lucky I think !!

Morgan is continuing to get better and grow stronger. She can now dream about leaving the hospital and imagine herself back home. Just “that” thought will bring on the healing process. !!  She has not had a transfusion since November 21st !!  The longest run since her surgery. Everything is trending in the right direction. We recently moved rooms, from 1018 to 1008 , so its just down the hallway.  The room is shaped different and it makes it bigger . A nice change. Since we “live there” with Morgan and the rooms are all very small to begin with,  this change was a happy one for all of us.

Shaun came just before Thanksgiving, and is staying with us while he is on his winter break. Its very nice to have the whole family together.

In a meeting with the doctors the other day they said , ( while looking at Mike and I ) ,” the hard part for you guys is coming up”?????!!! …….I think I stopped breathing……. thinking that I was weary to the bone at this very moment and have been there for awhile. I guess we just “do it”, whatever we have to do we just do.

On that note : We are selling some things back on Maui. :-}

 

FOR SALE: We are selling our 1976 BMW 2002. It is our pride and joy, so I know that someone will love it as we do. Please inquire via e mail if you are interested in knowing more about it.  laurna.m@gmail.com.

I also have some FINE ART, that is for sale. Please inquire about these !!

There is also a DONATE  button here on the blog site that is through pay pal. It is a humbling experience to be in a place where the universe helps you , and I thank thee.

Before you know it, we will blink ,and it will be January, a new year…….. with lots of new surprises. I just know it.

HAPPY HOLIDAYS TO ALL !!!!  May your days be blessed with pure and simple “JOY”

These past two weeks have been monumental for us here in Boston.

Morgan was transferred out of ICU a week ago Monday. We now live on 10NW. It is three floors up and has a view of the city. What a great day that was. Settling into a new routine (……. you know “change” ) has been demanding. Mike and I have  discovered that we need to be “on it” as advocates for Morgan. The doctors and nurses have different protocols, here,  on the floor, concerning the administration of medicines. Some of which are not in Morgans best interest. And each day are new nurses. 🙂

The room is much smaller, and we  do a lot of tripping over ourselves. It is amazing how creative you can get when you need to. !! One of our projects that we started a few months ago was the making of 1000 Cranes. In the ICU room we had the Cranes  hung all over the room, in strands.  In Morgan’s new room we spent the first few days re-stringing the Cranes in longer more compact strands. We are now up to 725.

Some Boston “well wishers” Gail and Debbie Marchetta,brought Morgan an absolutely gorgeous hanging of 1000 Cranes. She is opening the box in one of the photos. And…Sally Sefton said that she is sending a box of 1000 Cranes that Seabury folks made. I can’t wait !! It is going to be so beautiful and fun. I will try and take a video to post of the entire room full of Cranes. In two of the other photos we are wearing hats made by Sue Murray.

A few weeks ago we started looking for a new place to stay. Our original offer of an apt was suppose to be for 6 weeks to 2 months or so. They have been so kind and giving of their apt. Periodically, when they came to town,  we left and stayed at the hospital home. This moving around is actually very hard to do.  A  good friend of ours from Maui has a brother, who lives here in Cambridge. His wife sent out an e mail to her e mail lists around town. Well, it ended up on the producers desk of Channel 5 News. They came out to the hospital and did an interview. Then FOX News came out AND the Boston Globe did an article. WOW……… within an hour of showing on the air there were so many offers of homes, rooms, meals, use of cars etc. I was delightedly overwhelmed , and could breath easier realizing that  “everything will be OK”.  Our original idea was that we would like to “trade our house on Maui for one here”. There were only a few people who actually wanted to trade.  The news covered all of Massachusetts and the offers of homes and trades  were all too far away from Boston.  We rely on public transportation and know it will be a challenge when the winter months set in,  so the closer we are to the hospital and Sumers school, which is in Cambridge the better.  It has taken weeks to go through all the offers and send out responses to them.  Our son usually comes home on his college break, and since our “home” this year is here in Boston, he will be joining us in a few weeks.

Leaving your home, thinking you will be returning on a certain date, and then not knowing “when” it will actually be,  is a humbling experience. To surrender to what presents itself around the next corner, is a recipe for lots and lots of deep breaths. There are so many decisions to make and so much to think about, and frankly it is very hard to do when you are in a kind of limbo.

Our world is very small in a way. Mike and I spent each and every day in the hospital in Morgans room. Then one of us leaves in the late afternoon and goes back to where ever we are staying to spend time with Sumer ( after school ) and get a nights sleep, returning the next morning to the hospital.  Our arduous support with Morgan’s care is an essential part of her recovery, and we will stay by her side until she is able to leave the hospital. That is all we know right now.

We have been touched by so many people over the months. We have received support in so many different ways by so many people. From our warm winter clothes, to a place to stay,  good food and monetary assistance. Our journey is not over, and your continued support will never be forgotten.

Mahalo Nui Loa

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  • joyce naruse: This just reminds me to be thankful for everything I have and for our good health. However, when I read your updated posts, you never cease to amaze
  • Kim: Amazing love...amazing family.....AMAZING MORGAN!!! So happy for you guys! Aloha from the McPhersons!
  • Alan Hodara: I'm so happy for you Morgan, I've been following your journey and this is the greatest news. Best of luck in San Francisco. You'll be 3000 miles close

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