Header image

Yesterday was a better day.
After days in anxiety, panic and sadness we got some better news.

It was a long day starting with radiation, his port needle was not working so they needed to re access Jacob without numbing creme. He did not say a word, did not complain or cry. They put a needle in his chest and I was the one holding my breath.
He should have a medal, a big one for all the things he is going through…
After that Jacob had a new ct scan done of his lungs. At the clinic appointment the port was not working again, so Jacob chose a finger poke, as the option was re accessing his chest again. 
The ct scan showed whatever is in his lung has improved, after all they still think it is a fungal infection that is the cause and we are now back on anifungal medication.
Hopefully now with some immunsystem and in a phase of treatment that is not as heavy as before and with the right medication he will be able to fight this fungus.

We have now entered the part of chemotherapy that is called maintenance, for Jacob it starts with ten days of radiation, (he already had 3) and then chemotherapy at home and once a month chemotherapy in clinic.
Here in the beginning doctors are figuring out the right dosage of chemo for him and also because of this infection we will be going in checking labs more often. But we hope and wish that the time with fewer clinic visits will soon be here.

Sofia

Today we didn’t get our questions answered about what is causing Jacobs lung to be infected.. Doctors are not sure if it’s Jacobs own immune system attacking himself, or if it’s an inflammation, infection or something else.. They have scheduled another CT-scan this Friday as they need more data before giving Jacob a diagnose.. Sofia and I are very scared and feel we have had enough with the one diagnose of cancer and don’t need one more to add on top of it.. Doctors indicates that problems with the lungs can be serious and slow and hard to treat.. One of the treatments is in direct conflict with Jacobs cancer treatment so we need some positive news soon. We hope to get some preliminary answers this Friday and on Tuesday all Doctors would have met and hopefully can provide a diagnose. Help

Tomorrow Jacob us having the ct guided biopsy at 2pm that will hopefully clarify what is going on in his lung. Doctors believe there is a fungal infection but need to get it confirmed, and make sure they are not missing anything. 
His immune system has been going up until this morning when it dropped a bit, doctors say it is normal but I wish for Jacob to soon have a healthy bone marrow and a good immune system

The last days have been good, Jacob has been in good mood, and we have spent lot if time in the playroom. Jacob weaved a scarf, pirates came to visit and Jacob even played chess with one of them.

Please pray that everything will go well at Jacobs procedure tomorrow
Pray for a healthy bone marrow 

I also want to thank everyone who has been helping out the last days (and weeks) I’m so thankful an touched,  thank you for the generosity and love you are showing our family. 

Sofia

Hey all,

Thanks everyone who has responded quickly to the previous update. I wanted to put some additional details out there for some hands-on help this week if you are local and your schedule allows.

The carpet cleaning has been scheduled for Wednesday from 2-6pm. David will be moving some of the lighter furniture out of the carpeted areas this evening and tomorrow evening and may be able to use the help of 1-2 guys to get the job done a little quicker on one or both of those nights. The technician will be on the job Wednesday afternoon, and David will be there from 2-5pm to help move some of the larger furniture that is too heavy to remove from rooms, but will need to be shifted around for the cleaner. If there are 1-2 guys that can be available to help at that time also, that would be extremely helpful. If you can help, please give David a call. (425)516-8780

Kristin is leading the other cleaning efforts this week, and we’ve supplied her with names from those who have filled out the help sign-up form, so if you’ve signed up any time in the past year, you may be hearing from her by email or phone as she gets a team together. As soon as I have the details from Kristin on the date/time for a cleaning party I’ll post that here. Feel free to contact her directly if you’re interested in helping this week. (425) 605-0970

***Edit: The cleaning party is happening on Tuesday, March 13th at 7pm at the Schaub’s home. If you’d like to help, you are welcome to show up at that time, or contact Kristin (above) for details/address info etc.

If you’re just getting up to speed, check out yesterday’s post here.

Emily

Hi Everyone,

It’s been a long time since I’ve made an update on behalf of the Schaub Family, but I’m hoping to get everyone up to speed on what is going on right now, what their current needs are, and hopefully we as a community can come around them once again to help them in some very practical ways.

Most of you know that Jacob has been in treatment throughout this past year, with a few ups and downs, but mostly successes in his fight against cancer. So many people have offered encouragement and support to the entire Schaub family, and I know it is their hearts to express gratitude to every one of you who have helped in small and large ways. They are still moving forward because of the selfless people around them doing what they can to ease the burden and strengthen them through this truly difficult experience.

David and Sofia are remarkable parents, and most of the time no one can see the magnitude of their struggle to manage logistics, emotions, needs, and finances in the midst of all that is going on with all of the boys, with Jacob, work, and home. With the turn of 2012, they both hoped they’d see an end to this past challenging year, and see Jacob off into a new season of continued recovery from this journey. We all believe this is still coming, but these past few weeks and months have been extra-challenging in ways no one could have foreseen, which is why I’m writing this update to all of you now.

If I can speak as a friend, I think the situation is so multi-dimensional, and so unexpected, neither David nor Sofia have known how to ask for the kind of help they need right now, which is why I’ve been on a mission to take stock of everything with a clear mind and put all their needs out there so those who feel led to help can do so. Regardless of the brave faces they put on, the Schaubs really need us to gather around them and help hold them together through these coming weeks. Please consider the list below and see if there is a way you can help:

- Jacob is currently admitted to the hospital for an infection in his lungs and his immune system is more compromised than ever. Before he returns home, we need to arrange for their home to be cleaned (carpets and surfaces throughout) much like it was when he was first diagnosed. We’re arranging for a professional carpet cleaning company to do the floors, and will also need a work-party of volunteers who can help move furniture for the cleaners, as well as people who can thoroughly clean surfaces throughout their house. No date has been set for this yet, and there isn’t yet a team leader for this specific cleaning, so if you think you can help in this way, please let us know. Contributions toward the cost of the carpet cleaning, and cleaning supplies can be made through Band of Brothers NW on the right side of this website. ***If you happen to know of an environmentally-friendly carpet cleaner who might take on this task for cost, please send us leads!

-David has been home from work for the past month for personal reasons and to help with this turn of events regarding Jacob’s health, and they have a number of outstanding bills due this month that they don’t have immediate funds for because of some of the unexpected things that have happened. If you feel led to contribute in any way to these needs, you can do so by donating to them through Band of Brothers NW on the right side of this page, and please remember that many companies (like Microsoft) will match charitable donations if you register your donations through them. If you’re not sure, ask your employer if they have a match program. Every little bit helps.

- David is actively looking to sell their boat, and may need some help doing so. If anyone has a connection to someone who can help determine the boat’s current value and/or has connections to help him sell it, any leads would be much appreciated.

- Lastly, David & Sofia would probably never say so, but I think they’re both in need of serious encouragement. If you’re a close friend, please reach out to them! They’re in a ‘tunnel’ of sorts, just trying to do their best to hold everything together, but both of them could use lots of hugs, laughs, small gestures & notes…A small amount of encouragement goes a long way, and of course, your prayers are always appreciated.

I think that’s all for now. Thanks for reading this long post, and thanks also for being part of bringing this family through the toughest time of their lives. You cannot know how important your role is to them!

With love,

Emily (family friend)

 

 

Not much new was said on todays round, answers on all viral and bacterial tests are still negative. Monday or tuesday we will have the galactomannan test back that hopefully can point more to what fungal infection Jacob has. If not he will have to undergo a bigger procedure, a lung biopsy, 
for doctors to get a better sample.

Good news are that Jacobs ANC today was 198
and will now hopefully continue to go up to help him fight infections.

Yesterday Jacob was in good mood, we took a walk on the floor, got some candy, played, jumped and run around in our room. 
Today Jacobs teacher rosemary come to tutor and I took the opportunity and went for a run.
tomorrow if Jacobs ANC is over 200 he can go to the hospital school, and at 2 they are having sticker fun in the playroom.

Please pray for even higher ANC and for doctors to get the answer they need to be able to treat jacobs infection

Sofia

För de som inte riktigt hängt med eller förstår varför vi är glada över ett ANC som är 200 gånger lägre än det skall är en liten summering
över den senaste veckan, en vecka som har varit en av de värsta i våra liv.. Jacob har varit ur behandling i en månad, han har haft feber till och från dagligen, infekterad lunga, i risk att ta skada av antibiotika, antibiotika i vårt sista vapen mot cancern när ANC är noll), hans benmärg har
legat still och inte gjort någonting, vi har varit extremt rädda för en relaps (återfall) vilket hade tagit hans 73% chans att överleva till något närmare
50%. Tidigt idag fick Jacob igen feber samt tappat massa blod och måste få transfusion igen.. men den stora nyheten var att hans benmärg inte hade dött av all hård cellgiftsbehandling och faktiskt börjat producera friska vita bloodkroppar av typen ANC (Immunförsvar).. Jacob är mkt sjuk och hans förmåga att själv slåss mot inre svamp i lungor, feber, infektioner, influensor mm är superviktigt för hans överlevnad. Idag e en bra dag (Som jacob skulle ha sagt).. Visst, 19 är lågt.. 200 klassas ju som noll, 500 betyder hemma-karantän, 750 är det minsta för att överhuvudtaget få cellgiftsbehandling, 3000-7000 det normala.. jacob blev sjuk och inlagd för ett bra tag sedan (Har tappat räkningen på dagarna), han och sofia har bott på sjukhuset i över en vecka.. vi vet inte varför han blev sjuk men även med cellgifter avslutade så har han normallt ca 10% av det immunförsvar andra barn har, i bästa fall vilket gör att vi är extremt oroliga och då detta har dragit ut på tiden och vi fasar över cancern finns där inne och nu gror sig stark är vi rädda, mkt rädda. Behandlingen det senaste året har konstant hållt hans ANC nere under 750.. ju mer gift dom kan få i honom utan för svåra bieffekter ju bättre så tyvärr högt immunförsvar är inte något vi kan räkna med.. åtmistånde inte tills hans behandling är klar.. “best case scenario” är 3 års behandling + 5 år check-ups, efter det kan Jacob klassas som ej längre dödssjuk.. Han är dödssjuk!! Han har ej längre rätt
till att teckna livförsäkring (Jag har försökt, det gick inte så bra när man nämde Jacobs diagnos).

Hursomhellst, idag är en bra dag! – fam schaub

ANC 19 .. last night the last thing Sofia reported from the hospital was Jacob again had spiked a fever.. I had nightmares all night, the worst ones you can imagine.. Lucas (In my dream) spiked 43 C (Again in my dream only) and stopped breading and had no pulse (Again only in my dream, not to worry here).. I woke up worried about Jacob and called Sofia just now (Woke her up unfortunately).. She reported that Jacob needed a blood transfusion but also she reported HIS ANC WAS UP 19!!! I know this is ridiculous number when ANC 200 is considered cero immune system and 500 means house arrest and his normal is in the thousands.. ANC 19 means Jacobs bone marrow has woken up and is now in the business in making healthy white blood cells of the type ANC which will slowly enable Jacob to start fight infections and deal better with his current poor condition.. this is the best news I could have asked for.. I’m so happy I started to cry this morning after hanging up the phone with Sofia.. crazy good news in all this misery.. Now we have three sick boys in our family (myself included) and a long way to go but at least there is hope now that Jacob starts to recover!! SUPER HAPPY DAY FOR THE SCHAUB FAMILY!! HURAY!

/DAVID

Today Jacob had a bronchoskopy done. That means they went with a camera through his airways down ro the lung, there they made a little spin and splashed som selant to be able to get a sample of the infection. That they are now growing in the lab.
Jacob was very excited as he likes to be put to sleep under anesthesia. 
The doctors were happy about how the procedure went and they are now hoping they got enough to see if and what type of fungus it is to be able to treat it right.
But it will take time to treat, we are looking at 4-6 weaks at least and with an immunsystem of zero it might take even longer. But first they have to be sure of what type it is an how well it responds to given medicin. Also Jacob has to get his own immune system back.
so we will stay at the hospital at least one more week, then we can start discussing how the rest of the treatment will be done. 
Also it is important he can start his chemo and radiation again. 

Please pray for bone marrow to recover and for Jacob to recover quickly from the infection

Sofia

Today infection team has been taking a look at jacob and starting discussions for the next steps with his cancer doctors.
Tomorrow we will know the plan, but as it looks now they are planning to go in to the lung and get a sample to see for sure if it is a fungal infection and in that case what type.  

Jacob had a good day today, and I got a break when his teacher Rosemary came to tutor him. He has been watching curious George till midnight and telling me about all the things he wants to do when we get home.

this evening Jacob spiked a fever again, but after talking to several doctors they reassured that is normal when having this type of infection and low counts. 
of course I’m still worried
So please keep praying for us

Sofia