Vi avslutar snart den 10e resan, men med lite mer hopp (In English at the bottom of the post)

In English below.

Jag tror att vi snart bott här på Ronald McDonaldhuset i SLC i nästan 30 veckor sammanlagt, det är mer än ett halvår. Det är ett speciellt ställe, fantastiskt, men speciellt. Man känner sig instängd, inte på grund av huset eller människorna här, utan på grund av situationen vi och de flesta andra som bor här befinner sig i. Vi är här av olika skäl, en del några dagar, andra i månader, ytterligare några kommer som vi, med några månaders mellanrum. Den gemensamma nämnaren är att vi har barn som är sjuka, att vi är rädda, trötta, men försöker vara starka.

Denna gången har jag promenerat mycket, för att få tiden att gå, för att mota bort demonerna. Ediths mamma terapi-virkar i tystnad tills det blir fel, då svär hon högljutt. Jag har gått i alla väderstreck, minst 12-13 000 steg om dagen, ofta mer. Nån gång har jag lyssnat på musik i lillebrors Airpods, på Lundells En man ifrån norr, …”med en sorg i mitt bröst”, ”där vintern är svår” nån gång på mer upptempo i de branta backarna. Men oftast lyssnar jag på omgivningen.

På söndagarna tystnar trafiken några timmar, på förmiddagarna är kyrkoparkeringarna här i SLC fulla och gatorna tomma. Många ler och hälsar när man är ute och går, en del man möter frågar ”How are you doing”, jag är inte säker på att de är intresserade av svaret, för de stannar inte, så man får vara snabb med ”Okey, thanks. You?” Men det är ändå trevligt på nåt vis och osvenskt om man nu inte går i sitt eget kvarter.

Vi har också försökt få Edith att komma ut mer, att promenera. Hon har fortfarande bekymmer med sina fötter, den högra är värst, även om det varit lite bättre efter justeringarna förra veckan. Händerna verkar betydligt bättre, om det inte är en tillfällighet. Hon har lite mer energi och fokus, i alla fall i de bästa stunderna. Den längsta promenaden ledde till en Thailändsk nagelsalong i parkeringshuset under Smith’s varuhus, sex kvarter rakt upp för berget bakom McDonaldshuset och sju kvarter västerut. Jag hade med mig en rullstol för säkerhets skull och som en möjlig rastplats. Edith kämpade på och gick i princip hela vägen dit, på hemvägen körde jag henne delar av vägen. I torsdags tog vi sikte på en McDonalds-restaurang några kvarter närmare centrum, annars har vi mest gått i närområdet.

En annan pappa här i huset, Scotty, har en tonårig son med en svår cancerdiagnos. Han promenerar inte, istället sysselsätter han sig i köket från tidig morgon till sen kväll. Han lagar mat för att ge sin son energi, glädja alla som bor här och han lagar mat för att hantera situationen, för att få tiden att gå. Hans engagemang i köket, tävlingar i att laga revbensspjäll och tacos, har gjort att de boende pratar mer med varandra denna gången. Alla i huset vet vem Scotty är och han har nog lärt känna de flesta. När han hörde att jag hade en blogg undrade han om jag ville använda någon av texterna han skrivit under sin vistelse här. Jag har valt att inte försöka översätta texten, utan publicerar en av dem i original, oredigerad.

IF I HAVE EVER HAD A HERO

There are many types of heroes some on tv some in capes with masks to hide their face
Some in suits with no fear of anyone knowing who they are
My heroes name is Alec and he calls me dad
With all odds he stands tall and walks on with his head held high no matter what the news
Tough as nails takes it with stride shows how much fight he has inside
He smiles goes on with I dont’t have time for cancer lets get this over with
Can I see the cancer spots that you cut out of me I think they are amazing to see
Still he stands undisturbed with twice the fight as before
I still don’t have time for this cancer I just want to get this over I have things to do
I have a veterinarian degree to earn I have horses to train
Dad this wont stop me a bit I got this
When I win this fight we can laugh with spite that I defeated this day with a smile on my face
See dad I told you I got this day and tomorrow to I am going to follow my dreams through
I will prove that with my strength and determination that I can over come anything
When I believe nothing can stop me even when the odds are not in my favor
Still I will fight till my last breath that is my code of arms everything I stand for
The man that I am becoming to live with dignity and honor
To be the man that my parents have raised me to be
This man is my hero that calls me dad

By Scotty Mort

På söndag påbörjar vi hemresan. Vi hade hoppats att hinna reda ut eller i alla fall få koll på våra skulder, men det verkar som om vi får en specificerad räkning först när vi kommit hem. Det hade varit enklare att försöka hantera dem här på plats och det är olyckligt att det dragit ut på tiden med tanke på att dollarn stiger igen. Egentligen har nog betalningsperioden gått ut, men någonting har strulat i postgången till Sverige så vi har bara fått fakturorna från läkarna, inte den stora, eller ännu större om man så vill, från sjukhuset för undersökningarna och operationerna i höstas.

Vid avstämningen med Dr Bollo i torsdags konstaterade vi att nuvarande inställningar verkar ha gett viss effekt, Edith har mått lite bättre, tiden måste få utvisa hur mycket. Eftersom Edith nu har en RNS-elektrod på höger sida i hjärnan har vi på många sätt börjat från noll med RNS-behandlingen. Om vi skulle stannat längre nu för att utvärdera inställningarna hade vi behövt stanna i flera veckor, några dagar gör ingen större skillnad. Och att stanna så länge går helt enkelt inte, vi måste jobba, dra in pengar, ta hand om huset och framför allt måste vi hem till lillebror. Vi längtar efter dig Valdemar.

Den tionde resan avslutar vi med lite mer hopp än vi kom hit med, nu ska vi bara ta oss hem också. Stort tack för denna gången RMH och tack Dr Bollo. Vi syns förmodligen i april igen.

/Ediths pappa Carl

https://gofund.me/3aca73e5

FIRESfighterEdith on Instagram

http://youtube.com/@FIRESfighterEdith

In English.

We will soon finish the 10th US trip, but with a little more hope

I think we’ve been living here at the Ronald McDonald House in SLC for almost 30 weeks if you count all the visits, that’s more than six months. It’s a special place, amazing, but special. You feel trapped, not because of the house or the people here, but because of the situation that we and most of the others who live here are in. We are here for different reasons, some for a few days, some for months, some come with a few months apart. The common factor is that we have children who are sick, that we are scared, tired, but trying to be strong.

This time I have been walking a lot, to pass the time, to keep the demons away. Edith’s mother therapy-crochets in silence until it goes wrong, then she swears loudly. I have walked in all directions, at least 12-13,000 steps a day, often more. Sometimes I’ve listened to music in little brother’s Airpods, to Ulf Lundell’s A man from the north, …”with a sadness in my heart”, ”where the winter is hard” sometimes at a more up-tempo on the steep slopes. But mostly I listen to the surroundings. On Sundays, the traffic quiets down for a few hours, in the mornings the church parking lots here in SLC are full and the streets are empty. Many people smile and greet you when you’re out walkning, some you meet ask ”How are you doing”, I’m not sure they’re interested to hear the answer, because they don’t stop, so you have to be quick with ”Okay, thanks . You?” But it’s still nice. In Sweden it is unlikely that a stranger would great you in such a manner.

We have also tried to get Edith to get out more, to walk. She still has problems with her feet, the right one is the worst, although it has gotten a little better after the RNS adjustments last week. The hands seem significantly better, if it’s not a coincidence. She has a little more energy and focus, at least in the best moments. The longest walk led to a Thai nail salon in the parking garage below Smith’s department store, six blocks straight up the hill behind RMH and seven blocks west. I had a wheelchair with me for safety and as a possible resting place. Edith struggled and basically walked all the way there, on the way home I drove her part of the way in the wheelchair. Last Thursday we aimed for a McDonalds restaurant a few blocks down town, otherwise we mostly walked in the blocks around RMH.

Another dad in the house, Scotty, has a teenage son who is battling a difficult cancer diagnosis. Scotty doesn’t go for walks, instead he keeps busy in the kitchen from early morning to late night. He cooks to give his son energy, to please everyone who lives here and he cooks to deal with the situation, to pass the time. His involvement in the kitchen, competitions in cooking ribs and tacos, has made the residents talk more to each other this time. Everyone in the house knows who Scotty is and he has probably gotten to know most of them. When he heard that I had a blog, he asked if I wanted to use any of the texts he had written during his stay here. I have chosen to publish one of them unedited:

IF I HAVE EVER HAD A HERO

There are many types of heroes some on tv some in capes with masks to hide their face
Some in suits with no fear of anyone knowing who they are
My heroes name is Alec and he calls me dad
With all odds he stands tall and walks on with his head held high no matter what the news
Tough as nails takes it with stride shows how much fight he has inside
He smiles goes on with I dont’t have time for cancer lets get this over with
Can I see the cancer spots that you cut out of me I think they are amazing to see
Still he stands undisturbed with twice the fight as before
I still don’t have time for this cancer I just want to get this over I have things to do
I have a veterinarian degree to earn I have horses to train
Dad this wont stop me a bit I got this
When I win this fight we can laugh with spite that I defeated this day with a smile on my face
See dad I told you I got this day and tomorrow to I am going to follow my dreams through
I will prove that with my strength and determination that I can over come anything
When I believe nothing can stop me even when the odds are not in my favor
Still I will fight till my last breath that is my code of arms everything I stand for
The man that I am becoming to live with dignity and honor
To be the man that my parents have raised me to be
This man is my hero that calls me dad

By Scotty Mort

On Sunday we start the journey home to Sweden. We had hoped to sort out or at least get a handle on our medical bills, but it looks like we won’t get an itemized bill until we get home. It would have been easier to try to deal with them while here and it is unfortunate that it took so long considering that the dollar is rising against the Swedish currency. Actually, the payment period has probably expired, but something went wrong in the mail to Sweden so we only received the invoices from the doctors, not the really big one from the hospital for the examinations and surgeries last fall.

At the meeting with Dr. Bollo last Thursday, we noted that the current RNS settings seem to have had some effect, Edith has felt a little better, time will have to tell how much. Since Edith now has an RNS electrode on the right side of her brain, we have in many ways started from scratch with the RNS treatment. To really evaluate the new settings takes several weeks. So to stay here few more days wouldn´t make much difference. And staying for a longer time is simply not possible, we have to work, earn money, take care of the house and above all we have to go home to little brother. We miss you Valdemar.

We end the tenth journey with a little more hope than we came here with, now we just have to get home as well. Many thanks for this time RMH and thank you Dr. Bollo. We will probably see each other again in April.

/Edith´s father Carl

https://gofund.me/3aca73e5

More information about Edith´s journey

FIRESfighterEdith on Instagram

http://youtube.com/@FIRESfighterEdith

#FIRESfighterEdith #Epilepsy #Epilepsi #rmhc_utah