Koaguitarman: Great Day! Going Home

[Mary]

Boring is good! Glad to hear he had energy to watch the tube. I hope Twyla let him handle the remote.

[Danno]

Bless your heart, Russ. You will continue to be in my thoughts and prayers.

Danno

[D. Ramsey]

Today he is being called upon to use every ounce of strength he stored yesterday.


He woke up with a deep congested cough that settled in his chest. The Dr. ordered a chest X-Ray to catch any possible pneumonia that may be starting.


His red blood counts were too low this morning. They were 7.1 so he had a blood transfusion.


The blood test showed the creatinine levels were too high again for the kidney to function so a urine test was ordered to run another test before changing/adding medications.


Then he said he was feeling better and wanted to try food for the first time since the transplant. He was given nausea medication and waited 30 minutes. He was told to take it slow so he had 3 bites of oatmeal, apple juice/applesauce mixture, 2 bites of banana. Everything stayed down. Great "first meal".


Russ showered and played guitar for about 45 minutes off and on. He started getting tired and nauseous by the time he got his guitar back in the case. He was ready for his medication and sleep. He got his zofran and took a nap.


He pushed too far today and his body just can't handle what his mind is wanting to do. He is getting restless and needs something to keep his mind busy while his body catches up to his old energy levels.


The portable X-Ray machine made it to the 6th floor this afternoon and Russ got his Chest X-Ray. Now we wait for the results. Russ was becoming so nauseous after the X-Ray.


This afternoon's blood test showed Russ' platelets had dropped during the day. His counts showed he is at 14 and he needs a platelet transfusion.


He started to get uncontrollable shakes. He kept saying he was cold but he had his beanie on and three warm blankets. We were told the uncontrollable shakes and sudden coldness were normal and part of the side effects of the Chemo... He was still very nauseous.


He was given medication in his IV line so it would start working immediately and the nausea calmed down. The shakes lessened and then he was given another medication and his body relaxed and he started to get drowsy. His Platelets Transfusion was started. It is best if he can sleep through the transfusions so he doesn't get sick.


He slept off and on throughout the evening. Just waiting for the night nurse to bring the nausea meds and the sleeping pill and this day will be done.


Good night everyone.


We could use some good suggestions of things that Can keep Russ mind active without draining his energy. He is becoming restless.

[SongwriterFan]

Originally Posted by D. Ramsey

We could use some good suggestions of things that Can keep Russ mind active without draining his energy. He is becoming restless.

The AGF could be what he needs. Do they allow internet access there?

Any kind of reading or games would be good, too.

[Chicago Sandy]

Crossword puzzles (on the computer or a tablet) will keep Russ engaged without the physical effort that might exhaust him. He might also want to try writing (if his voice is up to it, perhaps using dictation software).

Continuing to send good wishes and healing, strengthening energy his way.

[Mary]

Hey Dennis,

How about doing this. Give us an address in your signature line or each time you post where we can send do dads and whatever to bring a smile. Of course, get Twyla's suggestion on this. If he feels like going through the boxes with Twyla it will be a good time killer. She can do the hard work. Maybe as a group we could send small toys of "just for fun." He could donate them to the Pediatric floor or keep for his own entertainment. It would give him something to look forward to so he knows we are here for him. Not everyone will participate, but a few of us who know Russ will enjoy this.

How does this sound?

[cotten]

I appreciate the update on Russ. It helps my prayer life to pray for specifics. I like David's suggestion that the AGF might just be something that would keep Russ' mind occupied. A tablet might allow him to share his love for and experience with making music with koa guitars, and taking care of them when he's only been given two hands!

Another suggestion: tell him we need a song about the joys of chemo therapy, or maybe how hospital gowns can redefine "ICU."

cotten

[jalbert]

Having been in one myself for about a month, I understand how the ICU can drive a patient nutty. Watching TV isn't the answer, at least it wasn't for me. I understand that Russ' voice may not be up to it right now, but what was extremely therapeutic for me was to simply tell my story. Let's pray that the numbers that should go up do and that he'll eventually be able to receive visitors.

[D. Ramsey]

By Twyla Baur Lewark — Jan 1
Where did the day go? It seemed to rush right passed me today. Russ woke up this morning with a very queasy stomach and intestinal distress caused by the medication he was given during the night to flush out his kidney's. The creatinine levels are still too high causing his kidney's not process and eliminate properly. He was given two more bags through his IV late this morning for his kidneys increasing his nausea and intestinal distress.


After Russ was given his regiment of morning medications and pills he was able to rest for a little while. This was short lived. His intestinal distress increased and he was given pills to help relieve some of the discomfort. He slept for awhile after that.


Beverly and Otho stopped by to see Russ for just a short visit. They brought a card to add to his wall. Russ is enjoying his cards and his growing new room decor.


More medications to ease Russ' nausea and GI distress and another nap to sleep through the discomfort.


By mid afternoon Russ was in and out of sleep. Still not feeling very well. His long time friend Ben came by for a visit and right behind him Lalena came in at the same time. The two of them caught up on things while Russ semi listened in. They brought two more cards for the growing wall.


I asked the nurse for something for his stomach and nausea again. Russ slept the rest of the afternoon.


He woke, as a courtesy nod, for the shift change when asked if he needed anything.


He was given his Ativan for nausea at 8 pm which should put him to sleep for the night.


Oh, he broke out in a rash all over his back and his chest today and said it itches. The Dr will look at it tomorrow.


Thank You for all the great suggestions of things to keep his mind busy. I have someone gathering some things that were suggested so we can get Russ started on some of your ideas. If you have more suggestions or other solutions keep them coming. We will be here till the end of January and then a year at home with no immunities. So Russ is going to have a long time to use all these ideas! Thank you Thank you Thank you

[D. Ramsey]

Dennis, thank you for your loyal friendship and everything you are doing to keep people informed. AGF has always been a place Russ felt he had found his soul family. Everyone here gets what it means to hold that guitar, play that one song and really hear the music that comes out of the instrument. AGF gets it!

I like some of those ideas the members have come up with and will try to use them. Thank you. Oh, and tell Mary, yes Russ has full control of the remote- it's attached to his bed...
You are welcome to share my email address as well as my home address with those that would like to send Russ messages or a card, etc. Ashley brings all my mail to the hospital 2-3 times a week.
Please thank the AGF for keeping Russ in their thoughts and Prayers. I know we don't realize just how big the circle has become that is enveloping Russ but know we do feel the love and support each and everyone has given.

Cards, letters, gifts can be sent to:
Russ Lewark
7639 Finevale Dr. Downey, CA 90240

Twyla's email address: [email protected]

[cotten]

Twyla, please tell Russ that his many AGF friends are thinking of him, praying and pulling for him! You asked about things that might help brighten his day. Playing guitar, of course, but when that's not practical maybe he can write a silly song about what he's going through right now. Laughter doeth good like a medicine, and music therapy doeth even better!

With full apologies to Nat King Cole, perhaps Russ could turn his old "Those Lazy, Hazy, Crazy Days of Summer" into sure fire Hospital Hit! Maybe he could start with a simple fill in the blank approach, then branch out.

"Roll out those lazy, hazy, crazy days of Chemo,
Those days of ____ and ____ and ____.
Roll out those lazy, hazy, crazy days of Chemo,
Dust off your frown and gown and sing a song of cheer.

Just fill your I.V. full of _______ and _______,
Then ____ the ____ up, now you're set.
Just think of beaches with the girls in their bikinis
As cute as ever but they never get 'em wet

Roll out those lazy, hazy, crazy days of Chemo
Those days of _____ and ____ and _____
Roll out those lazy, hazy, crazy days of Chemo
And laugh at silly songs you’re making up right here!"

Don't remember exactly how it goes? Here's one Youtube version: https://www.youtube.com/watch?v=7OZrNDtRltg When he's got a winner on his hands, be sure to share a recording with us here!

John Cotten

[Mary]

Oh, Cotten. You are good. Keeping Russ smiling will be a grand thing!

Adrianne, Tim and I are sending Russ and Twyla our hugs!

[D. Ramsey]

Transplant Day +10

By Twyla Baur Lewark — Jan 3
We have GRAFTING!


The donor cells have found the bone marrow and have started the bond. Still a ways to go but this is the sign everyone has been waiting for. The WBC has finally moved from it's 0.1 status. We are now at 0.2 - that may not sound like much but it's MEANS the transplant has started working! It's a baby step. We should continue to see baby steps this week with small climbs in the White Blood Count and then some drops in counts as the donor cells find there way into more of the bone marrow and make the attachment.


Russ did need another platelets Transfusion this morning since his platelets dropped below 15 again.


He is continuing to have severe nausea, fever and headaches. He has started two more Anti-rejection medications and increased the dosage of one he was already taking. These drugs really take a toll on him and make him hurt and nauseous. He is now on 4 different nausea treatments to attempt to keep it at a tolerable level. His headaches are caused by the medications and are treated with morphine, vicodin and one other pain inhibitor.


He is having full body tremors and is very cold. He has a fever and has broken out in rashes over his back, chest, head and face. These are due to him contracting the GVHD - Graft Verses Host Disease. Many patients who receive unknown unrelated Donors do contract GVHD. Russ' medications, antibiotics and anti- rejection drugs are all working to fight this disease and it is a very common and expected part of this type of transplant.


This is all normal behaviors and should decrease around Day +14/+16.


I'm learning as I go here so I am giving you what I am receiving as I get it. We are all getting quite the education. Whether it be exact accuracy or not I couldn't tell you. Since every single patient is different and every disease treated is specialized to the patient with no two results, successes or even the ways they progress are ever the same.


Russ is a musician in his soul and to his core. He is sound asleep right now, fully medicated, arms out of the blanket. Left hand in some cord position that keeps changing, right hand down waist level just pickin and strummin. Just a couple cords or so... Made me smile. Nice end to this day

[Danno]

What a beautiful thing this is.....

Originally Posted by D. Ramsey

Transplant Day +10

By Twyla Baur Lewark — Jan 3



Russ is a musician in his soul and to his core. He is sound asleep right now, fully medicated, arms out of the blanket. Left hand in some cord position that keeps changing, right hand down waist level just pickin and strummin. Just a couple cords or so... Made me smile. Nice end to this day

[D. Ramsey]

Danno, that's how I felt too.