New Year's Eve Update...

Baby steps...and we'll take them! He is better balanced, and had lots of smile provoking company this week.:) The hospital staff is amazing. They go out of their way to help in so many ways, and to connect , in so many ways.The medicines are a balancing act. I know that I would not like so many meds. in my body. So with each medicine removal, I am pleased.

He was blessed by an Orthodox priest from a local church who just happened to be in the hospital blessing one of his parishioners who had been in a bad car accident right before Thanksgiving.After being sleepy all day, when Fr. came into the room, he sat upright and gave his hand. He was instantly wide awake. The icon he was blessed with is from the 700's,(yes, you read that corrrectly! ) and it is their patron icon. It has performed miracles here & in Russia. It had been preserved here during the war(s), and now visits Russia for one month a year. It is beautiful and very heavy, besides being ancient.He thanked Fr. at the end, and said that he appreciated it:).These are truly little miracles that run deep.

I hope that he will be able to come home after the rehab. hospital. He is learning much, and needs prompting at times, and the meds make him feel so tired, but as a learned neuro-onc. friend recently told me, as long as he progresses, there's no reason to think that he won't continue to progress-no matter how long that it takes:) xo Lydia

Amazing Walking and an Awake Christmas...

So Christmas Eve showed Ken to be tired out from all the therapy. But Christmas Day he was wide awake and enjoying his company! Therapy has been pushing him to walk hundreds of steps w/the walker... and they want him to start going up and down steps.

He has had a potassium issue here and there, which they feel is related to his chemo. They are adjusting medicines.

Thank you for all your support and prayers. He told me yesterday that he was feeling a bit better- this is a first, where he offered up this information.

Hope you all had a Merry Christmas and a Happy Hanukah!

xo Lydia

Starting to want to get back to some artwork, as it helps to balance me. Shifting gears for me is still a bit of work. ..as my focus has been on Ken, the kids,home......later alligator:)

Rehab. Hosp. for Brain Injury/Stroke

Came to Rehab. Hosp. on Fri. Dr. said he was better than he thought. The problem , he thinks, will be Ken thinking that he can do more than he can- ie- physically able to do, but, balance is an issue. They are also changing some meds.. He now has his permanent Occupational, Physical, and Speech Language Therapists.

He is bathing himself, brushing his teeth, sitting up, standing, getting in a chair, and wheel chair. Since he taught wheelchair tennis, he has been in a wheel chair before. He originally sat in one and played tennis in one to see how to approach his wheel chair students. He also has taught soldiers at Walter Reed, as well as other wheel chair students. He coached the top wheel chair junior in wheel chair tennis, who was also the first wheel chair doctor to graduate from Yale Medical School. An amazing individual who has inspired many. Now, maybe Ken can inspire him. (:) xo R.)

Much to do. Christmas is upon us. Tree should be going up tomorrow. Things are moving along. We are happy to have Ken 'home' for Christmas. Being in the rehab. hospital is home for us- as this all happened out of state, the day after T-day. Now, we are just a drive away.

Thank you God. ...just one miracle after another. Thank you. I pray for many more.

xo Lydia

PS- my hubby is amazing, and keeps progressing each and every day. All vision, all moving body parts. His sometimes intricate speaking about how he feels is astounding, and he was concerned for a tournament that he does at the club after Christmas. He said that he had to call this guy, Dave. It has been done already- but just that he can drag this out from his memory is truly amazing.

Rehab Here We Come!

Closer to getting him home. He has a ways to go, and transporting him has its risks.

Thank you all for your emails, texts, comments,cards, music, prayers, warm thoughts, visualizations feelings of inspiration(xo-NH) ..... :)

He walked w/the walker, then sat up in a recliner for over an hour. He is concerned about his clothing for transfer, and I know he misses everyone.He thanked the neurologist,(and told him that he appreciated his help) ,who I really liked since the ER. We have been so very blessed. And this latest unit is so excited for him moving to rehab. They have had him for a week and a half and have come to know him.

So he's been here for 3 weeks! Hope the snow is no problem. Should be . Leaving in am, and snow coming in pm.

Much to do. Goodnite.

xo Lydia

Working on getting into rehab for Christmas...

So things have been moving rather quickly. We have the most unbelieveable social worker working on our behalf for discharge. We are praying to move Ken by Friday. The nurses have to log his progress . This progress has impressed so many of them. He has a long way to go, but he surprises the heck out of us daily.

I cannot even write about so much that happens. I sometimes walk so quickly everywhere, notebook always in hand. I have to charge my cell phone at least 2 times a day. I think that the battery gets drained from being in the hospital.The nurses and aides in this unit are just plain great. They so want the best for Ken and us.His physical therapist even came in extra today, when she said that she would be in tomorrow. Yesterday he stood up 3 times with a walker, and kept working on holding his head up. In bed he sometimes sits up.

But, today, oh my!...His wakefulness is greater each day. Even the nurses and aids are noticing sooo much more and are so very excited.He wants to get better. He wants to get home. He wants to work at doing the best for him. Sometimes he is tired, and yesterday he told me that he 'has his weak days'. He worked with his legs so well today with Candice, the physical therapist. She is so motivated to work with him.

He is talking more with the doctors, and the nurses have to log EVERYTHING for the doctors to see. We have to remind everyone. He talks with us for hours. We've been watching Christmas movies, cartoons, etc.. We play music- Leo Kotke of course, and relaxing Christmas and piano music. It is usually too sedate for him, but right now it seems to be good for him, and it is relaxing for me and his family.

He is taking his Protocel 2x a day, and we are progressing towards the 4x a day. I have used Rescue Remedy spray and cream. The cream has speeded up his recovery on his bottom, which was so very tender-ouch! It has remedied in just a few days almost entirely. Hope that it continues. They also gave a different medicine. Even the nurses started to use the cream, as they saw that after so much time he just was getting worse. You cannot believe the recovery rate.

I also credit the Protocel for his more rapid healing. They have even asked us to bring in foods for him, as he needs to eat more, or they will have to put the nasal feeder back in. So he asked for fruit cocktail! He's been eating mashed potatoes with butter and gravy, spinach, ice cream, chocolate pudding, pears, peaches, ice tea, juices, and nutritional drinks. They are counting his calories. He only started to eat this past weekend after not eating for over 2 weeks -except for 1 time with the speech therapist when he had a little applesauce and ice cream.

So, tonite he actually started to 'argue', (in a very subdued way):)!!!! When he does these things, we look at each other , give thumbs up, and smile broadly. You know, starting to argue means you are feeling better. hahaha ...and today he started his foot movement. He does this when he is getting ready for something. He is a foot 'wagger'. It was great to see this come back as well.

He also couldn't get comfy in bed. Also a big thumbs up! It is because he is feeling better and way more aware, remembering more every day!!! He thinks that the whole situation is weird, and I would too if I were in his shoes. He does not like being in the bed, because he is so awake and aware.(smile, smile, big thumbs up!!!:) ).

His situation is still very precarious, this we know. But, as long as he wants to get better and progress, we will give him the best environment possible for him to heal and feel better. Statistics, shmatistics, there is nothing to do but support him!

If I do not post in a while, know that the pace is so very hectic. A change will no doubt produce a host of other challenges. Thank you for your continued prayers and support. I know that we cannot predict the future, but God is directing the show, and I can do nothing less than to make the most positive environment for him no matter what.

Good night and God Bless.

ps- I have been speaking in Russian and Spanish to him at times. He speaks and understands both. He responded in Spanish, and used some Russian words as well. Gotta' stimulate the left side of his brain!

"How are you getting me there?"...and meanderings of my mind...

Ups, downs, all around. I am amazed at the phenomenal people in our lives. People who care, and support, and love. "What can we do?", they ask, over and over again. And I am super proud of our amazing children. Teenagers being teenagers can give any parent a run for their money, but We are truly blessed with loving kids who want the best for the family. Tough growing up.

My youngest, # 3 , is and always has been an above average student. He has always been one of the smartest in his school. And if absent, he doesn't miss a beat. Does 93-97% and 97-99% above the average student in the US in reading and math sound wonderful to a parents ears?

And #2, what a highly compassionate and sensitive individual. Her creative writing has been evident since she was a youngster. She marches to a different drummer, and is the easiest going when she has enough sleep. Her favorite hobby is probably reading as we always have to ask her to get some sleep, she will read all night long if she has her hands on a good book.As a youngster, you could take her house hunting all day long without a peep, her stamina is amazing. And as an infant, she slept through the night at 12 days old, I thought that I was in heaven:)

#1, is, well, #1. She is a true first born , 'take the responsibility upon her shoulders' gal, who is no nonsense, yet very forgiving. Her heart, like her siblings is filled with golden love and generosity. A constant giver and multi-tasker, she does the work of 10 or more. Like her Mom, art soothes her soul. And she loves antiquing, and is a great companion for doing things. She will keep going 'til the job gets done.

We are the average family, with our ups and downs, laughing, joking, fighting, apologizing, forgiving, then starting all over again. I feel so very sorry for those families who can not tolerate emotions. I want on my tombstone to be written, 'She wore her heart on her sleeve.....and that's a good place for it to be.' The latter part of the phrase is what my neighbor /best friend from my last house used to always tell me when I would say the first part. She is an amazing person, a double amputee from diabetes, in her 70's, and the most grateful individual you could ever find.

God has always placed the most amazing people in my life...in our lives. You know, I lost my father when I was 22, soon to be 23. I was devastated. He was my first Valentine. When he died, I wrote a poem, "to My First Valentine". The local paper published it . My Dad would always write letters to the editor, etc, to the paper. Around town, when people would hear that I was Nick's daughter, they would always know who he was and say something. If they liked what he wrote they would comment positively. If they were opposed, they would say, "Oh, so you are Nick's daughter", either way, they respected him...so many people knew him. When he died he was the President of the library board. I would come in to the library years after his passing, and they would check my books out, see the last name, and remember him with such kindness and admiration. I felt as if my father was continuing to give to me through others' kind words about him. It helped me through my loss.

When my very unique and loving Mom left us in '99 I was then officially an 'orphan'. I miss talking to my parents. In our family there was loving and laughing, and fighting and apologizing, and forgiving. It is the cycle of things.Our Russian/Byelo-Russian background is colorful. People are colorful. I have always had a happy childhood, and I always will. I know that with all we go through, our kids will do the same. My Dad would always be proud of when we stood together, even if it was against a parent. It showed him that we would always be there for one another. And we are. We are not perfect. Who is? We all all very opinionated. We all different, and yet we all hold good strong values, and want to do good in the world, and for the world.

I watch our children grow, weep, learn, laugh, fight, and forgive. They tell the truth, even if it is not something that we want to hear. They fight and scream, then laugh, hug, and kiss. They look after each other, and now I see them standing tall, being there for one another, even between the arguing. Two strong , good and stubborn parents make strong, good and stubborn kids.

It is a shame when someone not privy to closeness looks in and sees only the bad. My Mom always said to look for the good in others. I pray that our children will always look in and see the good. I pray they they will learn to be less or non-judgemental, continue to be forgiving, and compassionate to others. Just walk a mile in my shoes...that has come up a few times in our lives very recently. I pray that when our children encounter these people who think that they know better than the loving interior, that they will continue to forgive and go above such poorly directed souls.

So, he asked me this morning, "How are you getting me there?" So I told him. I told him again about the amazing support and love in our lives...the family, friends, and even acquaintances who have been touched by my husband, or a friendship from one of the rest of us, and be so very giving, kind, and generous in spirit , support, and love. Forgive me my blubbering and repetition. Is this not what God wants us to see in our everyday lives? With all the hecticness in our crazy worlds others have been inspired by the stories of those who are willing to go out of their way to help us. Wow.

To everything there is a reason under heaven. I have always looked for these reasons with events in my life that have occurred. It brings me peace in understanding in dealing with these hard times. It shows one who their friends truly are, and those who espouse friendship, yet understand not a thing about it. Ups , downs, all around, God give us all mercy,strength, and grace. Thank you for the people in our lives who help us through the tough times. May they always be in our lives, those who are emotionally involved, who support us, and bring out the best in us.

God Bless us all.

xo Lydia

What a Day....

So, I got to the hospital yesterday and slept over night. Yesterday was another hectic day. Do I even remember it after today's blur of events. I cannot believe how my mind is clear and I am doing everything that I need to do. Is it overdrive, or am I more healed from the Lyme disease??? Guardian angels are certainly with us, and I strongly feel that Ken is meant to do more here, even though we know not for how long.

So this new room, as I stated, is like a hotel room. What a difference these little amenities make.


Yesterday, I walked into the room , went for my notebooks, and Ken asked me what I was doing. I told him that I was getting Michael's number to call him. He asked me why. I said that I was going to ask him for help. It was as if we were talking in our house. He is now conversing with us, asking us questions, offering up statements, responding to the medical staff. His sister came in, saw this, hadn't seen him in a day, and was bowled over. And he was tired, but was up for 4-5 hours early evening continuously interacting, w/a couple of tiny snores in between. Wow.

But, last night I slept at the hospital again, and he kept me up til well after 4:00 am. Nothing I said convinced him. He moved , and squirmed, and moved, and contorted his body to slink as far low on his bed as possible to try to reach the catheter, poor baby. He even said at one point,"Aw, come on!" I laughed. Kept reaching for his hand to try and let him know that we had to sleep. He finally fell asleep, exhausted after about 4 1/2 hours of this squirming, and multiple nurses and aides coming in to redo his restraints . If he didn't have the restraints, he would yank out his feeding and catheter tubes. This would be painful, and would set him back...

I worked so hard last night. Ken is the consummate athlete and is very adept. Unbelievable. Well, I tried to sleep through a few awakenings and 'tending- tos' from the staff. It was a couch that turns into a bed. Not great cushioning, but far better from a semi-recliner in a cramped room with more monitoring.

This morning, was an abrupt awakening. Didn't get a chance to do my morning count back and prayers. His internal medicine doctor came, and suddenly the man was extremely abrupt, curt, and very non-informative. I walked away to the family room, very upset. I cried. What had I done to receive this reaction? Discrepant information from Ken's oncologist last night and this doctor- who, til this am was quite kind and easy going. Calmed myself down, talked to others to create liaison people as I do not want to get upset about this lack of communication. This is the doctor who went out of his way to make things easier for us by bringing us to the Cancer Unit for a calm room. ?????

I asked myself,"Who is putting pressure on this man?". Of course, I did not appreciate being the brunt of his frustration. Later found out that he was under pressure, meaning, from someone in the hospital. Maybe even for getting us into this unit. And, I think that 2 weeks is the hospital's initial payment period from insurance. Suddenly I was feeling great pressure to move Ken, as he is doing better. Of course, I have been asking about how to transfer him since ER! Anywho, not to go into so much detail about all of this, but things started to move.

The plan is to try and get him into the top Rehab. hospital on the East Coast.Hoping that he gets accepted, and that insurance allows this.We would at least like for these experts to see him. We know that this may not work out.So many little details. Met the social worker for the cancer unit who in a very short period of time did so much. Another head nurse suddenly started to get involved. Did I mention that the VP of nursing is the daughter of my Mother-in-law's friend? No, I did not ask to speak to anyone. Just asked what her last name was, as I had forgotten it.The connection was made in a very innocent question. Amazing. Don't care. Just wanted to move on to do the best for my hubby and family. After all, our situation has changed drastically in an instant. Asked for a patient advocate after the am doctor mis-communication. A doctor who cannot answer simple questions as to tests being performed makes the whole process harder. We surely understand the gravity of his situation, although some may not think so.

A lot of confusion about the barium swallowing test.... but, today Ken finally had it. Yesterday his oncologist told me that he had failed it. I was totally confused, as he hadn't been taken yesterday to have it! When I asked his in house doctor about it, the information received was less than concise, and absolutely did not jive with what the oncologist said . Lack of communication wrapped up in this matter...not answering questions, being cut off when asking my question...total confusion .

KEN had andPASSED THE BARIUM SWALLOWING TEST today!!! This evening, a tray of food came in for him! Yoo Hoo! He tried tiny tastes of 'corn on the cob' , gravy, a thickened soup, ice cream, and ice tea. Don't get so impressed, it all equaled less than a teaspoon. He had some applesauce and ice cream for a speech therapist test 2 days ago. Before that, Thanksgiving was the last time that he ate any form of food other than the nutritional drip. ( He threw up 3 times on T-day).

Well, his creatinin level has based out at a reasonable number, his chest has been clear. A little congestion here and there, but lastly, it was clear. The Vena Cava Filter is in place helping to prevent most or all possible pcs. of blood clot that may have been missed, or that may occur, for the lower part of the body. They removed him from one of the anti-seizure meds, which they feel caused his platelets, or mostly caused his platelets to continue to lower, and I was finally allowed to start giving him his Protocel- powerful antioxidant nutritional supplement that he takes. They will not use the feeding tube for this, but at least I can administer it.This is what he would want.

There was talk of a PEG- feeding tube into the stomach. The Dr. who does this procedure said that because his platelets were down, she did not recommend it at this time. This can change, and may have to in order to transport to a rehab hospital or facility.

I do not want him to see his current oncologist again. He was not even willing to look into rehab places closer to home for me. Told me to ask the local radiologist. Do you think that I have enough to do?...and my kids....???the home, work, the economy, endless paperwork.... I would think that after a couple of years of being his doctor, that he could ask one of the gals at the front desk to do this- even if just to humor me- as he is not very supportive in general. Another doctor/personal friend of 20 years himself offered on his own, but we are putting that on hold to try and get him into the best rehab place here , where this friend is affiliated.

Prayers for the transitioning and insurance to go smoothly, transportation to be paid, etc, would be greatly appreciated. Things , as of this evening, seemed to have 'smoothened out' quite a bit, with tunes changing.I hope that this trend continues. There are so many amazing people here, who are quite compassionate and helpful. I am amazed at how unbelievable most of the staff have been. And I am extremely thankful for this.

And, the support, love , prayers, aid from friends , co-workers, family , is simply mind boggling.
My husband is being thought about, prayed for, visualized... by hundreds and hundreds of people. How lucky is anyone to have so many people in their lives at all- let alone so many to cheer him and us on???

There have emerged some amazing individuals throughout all of this . More on these fabulous people later...And of course support from close family and friends to us all. Jean, I know that you understand all of this. The wheels are turning constantly. I am so very, truly humbled. Is this not what life is about? I really like his neurologist. A lot. A sane, informative, helpful, hopeful, concise w/information doctor. I have liked him from the beginning in ER. If I didn't have him, I don't know if I would be dealing with this all so well.

Good nite, and God Bless. xo Just, Wow.