Raul's Butterfly Release

At the end of Raul's graveside service we had a butterfly release. The company schedules them to be delivered the day before, so it was bit nerve-wracking making sure they were okay until the release! I did release one yesterday onto the red plant we bought for the cemetery, and it actually was still there this morning. Today when we released them they had warmed up more, so many did fly off immediately. Others hung around for a bit, and we tried to move them onto flowers.

Raul's Graveside Service

Today was Raul's graveside service and burial. My mom read an introduction/told stories about Raul, my dad and brother in law read poems, my sister read an excerpt from the Velveteen rabbit, one of my grandmothers spoke, and I read a poem during the butterfly release. I had chosen the poems and excerpt before Raul's Minnesota service, and we used them for both services. We also showed his memorial video back at our house after the service.

We got lucky to have a beautiful sunny day, as the forecast had been showing the possibility of rain/thunder as recently as late yesterday. We had been hoping for a fire engine red casket, but based on the catalog photo we thought it might be a darker red. We were very happy to arrive and find a bright fire engine red casket! On Friday we had also dropped off a truck blanket, little lovey blanket, and a few trucks to go in Raul's casket.

Because it is Memorial Day weekend, the cemetery had placed special flags on all the graves for firefighters, and this morning the man who runs the cemetery placed one by Raul's grave as well. We were very touched when we arrived to find this. Raul would be pleased, as he is buried in a cemetery with many firefighters!  

"To the living, I am gone.
To the sorrowful, I will never return.
To the angry, I was cheated,
But to the happy, I am at peace,
And to the faithful, I have never left.
I cannot be seen, but I can be heard.
So as you stand upon a shore, gazing at a beautiful sea – remember me.
As you look in awe at a mighty forest and its grand majesty – remember me.
As you look upon a flower and admire its simplicity – remember me.
Remember me in your heart, your thoughts, your memories of the times we loved,
the times we cried, the times we fought, the times we laughed.
For if you always think of me, I will never be gone."
Margaret Mead
"Don't think of him as gone away
his journey's just begun,
life holds so many facets
this earth is only one.
Just think of him as resting
from the sorrows and the tears
in a place of warmth and comfort
where there are no days and years.
Think how he must be wishing
that we could know today
how nothing but our sadness
can really pass away.
And think of him as living
in the hearts of those he touched...
for nothing loved is ever lost
and he was loved so much."

Ellen Brenneman

“The Skin Horse had lived longer in the nursery than any of the others. He was so old that his brown coat was bald in patches and showed the seams underneath, and most of the hairs in his tail had been pulled out to string bead necklaces. He was wise, for he had seen a long succession of mechanical toys arrive to boast and swagger, and by-and-by break their mainsprings and pass away, and he knew that they were only toys, and would never turn into anything else. For nursery magic is very strange and wonderful, and only those playthings that are old and wise and experienced like the Skin Horse understand all about it.

"What is REAL?" asked the Rabbit one day, when they were lying side by side near the nursery fender, before Nana came to tidy the room. "Does it mean having things that buzz inside you and a stick-out handle?"

"Real isn't how you are made," said the Skin Horse. "It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real."

"Does it hurt?" asked the Rabbit.

"Sometimes," said the Skin Horse, for he was always truthful. "When you are Real you don't mind being hurt."

"Does it happen all at once, like being wound up," he asked, "or bit by bit?"

"It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."

"I suppose you are real?" said the Rabbit. And then he wished he had not said it, for he thought the Skin Horse might be sensitive. But the Skin Horse only smiled.

"The Boy's Uncle made me Real," he said. "That was a great many years ago; but once you are Real you can't become unreal again. It lasts for always.'"

 

One Week

Today marks one week since Raul passed away. Last Monday at around 7:20pm Raul passed away, and today at that time there was a beautiful sunset over the ocean. Earlier today we visited the cemetery and the MA funeral home. Raul's grave will be the second from the woods, as the back one was pre-purchased by someone for future use (so for now there won't be anyone behind him). Across the cemetery you can see the police memorial garden, which I'm sure Raul would like! 

Not much news from the funeral home other than that the MN funeral home put an incorrect date of death, which will have to be sorted out! We also will not be able to see him again, unfortunately, so we are very glad we pushed to see him in MN and spent some time with him then! The lady also confirmed that Raul arrived from MN late last Friday night, and was brought to Rockport Saturday morning. When we got in the car to leave, one of the songs from his memorial video was playing on the radio.

MN Memorial Service Photos

Here is a sampling of photos from Raul's MN memorial service. It was nice to spend some final moments with many of the people who loved and cared for Raul over the final eight months of his life. The memories and cards from those who attended are things I will always hold dear, and they are tucked into his memory box with his ceramic hand print.

Travel Home

Over our last few days in MN we made lots of arrangements both in MN/MA, planned Raul's MN service, packed up his hospital room and our RMH room, visited Raul at the MN funeral home, and made a quick visit to Minnehaha falls (somewhere we had been meaning to visit since we arrived in MN).

We arrived home to Boston around 6:30pm last night. We actually flew over the hospital as we were taking off from Minneapolis. It was strange leaving MN after being there just over eight months, and to be flying without Raul for the first time in five years. Raul arrived in MA early yesterday morning, so I was glad not to be leaving him behind in MN.

Today we will drive up to Rockport, and tomorrow we will meet with the funeral home there and with someone to look at plots in the cemetery. We will be having a family graveside service in a couple weeks.

Raul's MN memorial Service

This morning we visited Raul as a family in the morning, then had a memorial service at the hospital in the afternoon. We are so thankful to all the staff who loved and cared for Raul these past 8 months, and were glad to get to see them one last time before going home.

During the service we read two poems, a story excerpt, and one of Raul's nurses spoke. We ended with a slideshow, which I attached here!

Day +216

Last night at about 7:20pm, Raul passed away peacefully in my arms, with his grandma by his side. 

Just a few hours earlier we had met with his doctors and were switching over to hospice care, but when he passed we had not yet changed much other than his code status. I think he just needed to know it was okay to go. We had expected to have several days to a week with him after stopping dialysis, but as usual, Raul had other plans and never even missed a day of dialysis. 

Raul's transplant was a success, his skin was improving, but as anyone familiar with his story knows, he had many complications and other medical issues. 

Raul fought amazingly hard over the past 8 months, but his body was tired. In the end he passed peacefully with no pain, his heart just stopped. 

"If love could have saved you, you would have lived forever"

Day +212

Raul has had a pretty hard week, but he enjoyed getting out in the sun this afternoon for some fresh air. He was very relaxed, even when we came back in. It has also been a week since he got agitated, which is great! And possibly the most exciting news is that he is finally weaned off his Fentanyl drip, which means he can be disconnected from his pole for most of the day! 

Unfortunately, medically things have been even more complicated. He currently has one respiratory virus, parainfluenza, which we checked for after a long night of coughing at the beginning of the week. He also has two viruses showing in his blood, both CMV and adenovirus. He started an antiviral for these last week, and his numbers were even higher this week, so we switched to a trial antiviral that they have had a lot of success with. He will get the new medication twice a week. 

His inflammatory markers this week were mostly stable. We had hoped to see them going down with the chemo, but we are still glad they are not going up. They wanted to try this med. for about three weeks, so we still have another week of it, and we increased the dose at the end of last week. We will meet Monday to discuss what to do if this chemo is not successful in treating the HLH. 

The pressure sore on Raul's head is one of his most concerning issues. It has worsened, so we are now trying vinegar soaks and applying Silvadene. This wound has a bacteria that is really only susceptible to one antibiotic, so it would be very dangerous for it to get into his bloodstream. If the wound continues to get deeper, this would become more likely. 

One of his other scarier issues is his gagging/choking. This week he has had several episodes where he has gagged and dropped his oxygen sats, or looked like he was choking, but thankfully he has not actually choked or turned blue. Sometimes he vomits a little, but it is usually more of a gag. Luckily these episodes are usually very quick, but they are still scary for him and us.

 

Day +208

We got outside again this afternoon, which was really nice! Raul enjoyed watching the traffic and snoozing in the sun. He had a good weekend, after a rougher day Friday. After dialysis on Friday Raul had reflux/vomited into his mouth, and had trouble clearing it. He did not stop breathing, but did turn dusky/blue-ish for at least several minutes. We suctioned some out, and eventually it passed.

After that he got very agitated from everything going on, and as usual his breathing acted up. The doctors ended up calling both a staff assist and a rapid response to get more eyes on him. After increasing his oxygen, getting several sedatives, and all the extra people clearing out of the room, he was finally able to calm back down. There was talk about him going to the PICU, but thankfully he didn't have to. 

Later that evening he started having low blood pressures, and another high fever (104.5 Friday, 105 Saturday), so they added an antibiotic and put him on a blood pressure medication for several hours. Today they took that antibiotic back off as he has been doing better and they want to save it for when we really need it, as some of his bacteria is very resistant to antibiotics.

We have also stopped putting the topical antibiotic on the spot on his head that was biopsied, as it was fairly resistant to them anyway. This spot had several types of bacteria, and the pathologist found it to be a pressure ulcer. Last night we changed his mattress to an air mattress to try to help with pressure spots, and we are working on getting a better moldable pillow for his head. We will also be consulting an orthotist on possibilities to help keep his elbows from constantly pressing into the bed as those areas have worsened significantly.

Last week Raul tested positive for adenovirus, so began a medication for that. We will be switching it this week though, as we got approval to use a trial medication instead that has had very positive results. This medication will also be less hard on his organs than the one he started on.

Raul has now had seven doses of the Ruxolitinib for his inflammatory issues/possible HLH. His inflammatory markers will be checked tomorrow and should all be back by mid-week. Despite the higher fevers at the end of the week, this weekend he has had very few fevers! The team increased his dose from 5mg to 10mg on Friday. He has still managed not to have worsening platelet levels as a side effect, and has continued to get platelets once daily (and red cells every few days).

We had almost weaned off Raul's Fentanyl drip, but then they realized that the end of the wean had been a bit fast for how long he had been on it, so they increased the dose a little bit at the end of the week. He should be off it this coming week instead, which will mean no more continuous drips! His med. schedule is surprisingly uncomplicated for how complicated his issues are!