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Jacob’s Status:
Doctors continue to monitor his kidney function, and they say his vital numbers are the same or better in every area, so nothing is worse today. Yesterday they did an ultrasound on his abdomen and the cancer mass there is still present, but they haven’t measured to see if or how much it might have shrunk.

Everyone is still learning the medical terminology for Jacob’s diagnosis and treatment, but since we had it down wrong before, we wanted to give you the exact correct name of the type of Leukemia he has. It is called Pre-B Cell ALL, CNS plus.

What Happened Today:
This morning Sofia was sad, but she had a really good night’s sleep last night, so it was good that she got rest. Jacob has been having trouble taking the four oral medications he has to take, so today that struggle took much of Sofia’s energy. David had been away from the hospital this morning, and she finally called him to come help encourage Jacob to take his medicine. Jacob can’t swallow pills, and the liquid versions of his medications have a really terrible taste, so they have been crushing pills and giving them to him in ice cream or other things, but even those have a really bad aftertaste, and Jacob is insistent on not taking them. Nurses said this is normal behavior for a child and Jacob is likely doing this because it is the only medical thing he has any control over, in addition to not liking the taste. In order to make it easier and a better experience for him, tomorrow they will be putting in a tube through his nose to his stomach so he can get his medications at the proper times with less trauma. David didn’t sleep well last night, so hopefully he can get better rest tonight.

Who Visited:

  • Jacob’s friend Hjalte and his family visited today and they laughed and played and Jacob was super happy to see them. They had a couple of hours of fun, and seeing Jacob happy made the rest of the challenges today seem worth it.
  • Molly, Simon’s preschool teacher, brought dinner for the family. Thanks Molly!
  • David’s friend Alexander has been here and Jacob has a great time with him and loves playing with his iPad.
  • Friend Mari brought Sofia her favorite Swedish dessert…it’s like a sweet bread with whipped cream, and this was a very special gesture for Sofia that she loved very much.

Please Pray:

  • For smoother delivery of medications
  • For consistent improvement in kidney function and other vital info
  • For David, especially, to get adequate rest

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From David:

Jacob, an amazing little boy.. stronger than we can imagine.

Today was somewhat a good day for Jacob. Although I have to mention throughout the day he was a bit reluctant to take his oral meds and only when they were mixed with his favorite chocolate ice cream he agreed to take them. On the bright side, since yesterday’s installation of a central line through his chest (the tube down his central artery) the nurses could finally remove a few of the needles and tubes that was sticking out of his leg and arms and he will now get most of his meds, chemo and blood through this single chest unit. Also his blood values looked much better and I am having the nurses printing out the details each night so I can keep an eye on the values. I can report that Jacobs doctors today again made positive comments on how well Jacob seem to cope with everything and despite his uncomforting situation still can enjoy playing with his sticker book or play one of his many new board or card games. The highlight of the day was when my friend Alexander installed a bunch of games on an apple IPAD and Jacob laughter was load and filled of true “momentary” joy more than once.

Some bad news though, its apparently not quite sure Jacob will ever be able to get biological children when he grows up as the chemo and radiation will mess with it (mostly the chemo). There is some new research we are investigating and I will meet with the fertility group tomorrow and learn what our options and chances are to enable Jacob with a rich quality filled life when he walks out of this nightmare.

Also in the event Jacobs condition gets worse or if he would get into relapse in the future I am now reading up on stem cell and bone marrow transplantations in the unlikely event Jacob in 1 week when his DNA tests are back get diagnosed “Philadelphia Chromosome” as an add-on to his “Leukemia ALL CNS plus”. Our doctor gave me the 10% risk prep talk yesterday but I can’t help to hope for better odds and will here paste in the results if you search on Wikipedia.com: “found in acute lymphoblastic leukemia[1] (ALL, 2–10% in pediatric cases”.

Another long day, David is signing out.

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Jacob’s Status:
Jacob had a lot of little things done today, but overall it was a pretty good day, and he has been happy and playing.

What Comes Next:
He is now classified as ALL, CNS Positive, which means they found Leukemia cells in his central nervous system and that radiation will now be part of his treatment plan. The doctors have done some DNA tests of the cells to determine the exact type of mutation, the results of which will determine whether or not he will need a bone marrow transplant. There are 3 types, and 2 of the 3 types will likely only require the radiation and chemo treatments. We will have to wait 10 days for the results of the DNA tests, and we hope that it is not the rarest form which requires the bone marrow transplant.

Parent’s Status:
Sofia didn’t sleep much last night, as Jacob was up several times and wanted her by his bedside. He was very sleepy this morning, but did better in the afternoon. Sofia is not looking forward to the 10-day wait for results, but she knows there is nothing she can do except be with Jacob right now, so she’s resolved to enjoy the time with him. She does sound lighter in her voice. David will be going home tonight to see Simon and sleep at home overnight.

Please pray:

  • For the results of the DNA test – that Jacob does not have the worst mutation
  • For the agonizing wait – that it would go quickly
  • For everyone to get rest!

Welcome to the online communication hub for the Schaub Family as they journey through the diagnosis and treatment of Leukemia Pre-B Cell ALL, CNS-positive with their son Jacob. Jacob was diagnosed with this condition on February 3, 2011. You can keep up with their journey and ongoing needs through this website.

In the right column, you can choose to translate this website into any language supported by Google Translate. This may be helpful for the friends and family who are not in the U.S., but please be aware the translation will not always be very accurate. You can make financial donations through the big red box in the right column if you’d like to help with the expenses they incur that will not be covered by their insurance provider. We hope you’ll find this website helpful in your efforts to support the Schaub Family during this difficult time.

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