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Jacob’s Status:
He has been pretty good, but gets really mad when Sofia can’t attend to him personally. He often won’t accept help or care from anyone other than her, so it can be really difficult for her sometimes to decide whether she should go straight to him or not. She said it’s difficult to know what part is the illness, and what part is the fact that he’s six years old and may try to manipulate her to get what he wants. He goes to the clinic tomorrow for blood work at 9am.

Please Pray:

  • That tomorrow’s values look good
  • Strength for Sofia, David & David’s mother to be able to help Jacob when he gets really frustrated

There is not much to report for today, except that Sofia said Jacob had a really good day. His special delivery (the LEGO Death Star) arrived and he spent the day working on it. Sofia said he didn’t complain as much about pain today, which is an answer to prayer. They have friends in, visiting from Sweden, so they’re having a good time together.

It’s growing harder and harder for me to write very straightforward updates about Jacob’s status and what is going on…not because I don’t want to do it, but because I feel like Sofia and the whole Schaub family are becoming such a part of my heart, and simply writing the facts and events leaves me feeling like I’m writing only half the story. Anyone who knows me well, knows that I love much and feel deeply, so I hope you’ll forgive me for taking a little detour to pour a little more into this update than usual.

Who knew that entering a new year would mean seeing life differently from this point forward? Of course we all now know that Jacob is very sick. The surprise is over, and reality is here. This is going to be a long journey, and it is going to take the efforts of many diligent doctors, the prayers of many faithful intercessors, the help of many selfless friends, and the favor of God to rid Jacob’s body of leukemia and help the Schaubs get through this challenging time. When horrific news hits, it’s easy to be caught up in the wave of compassion that pours out in the first weeks, but as time passes, those of us who aren’t face-to-face with this condition might forget how challenging this journey will be for them. Some days will be good. Most days will be very hard. And while they do all they can to restore Jacob’s health, they’ll be sorting through emotions of grief, loss, heartache, longing, powerlessness, exhaustion, discouragement, frustration, and more.

I know David and Sofia (and Jacob and Simon and Lucas) are loved by many, and I want to humbly ask you to continue loving in all the ways you can…with encouraging words, with practical help, with generous donations to help with costs, and with prayer. For the local friends who want to help in the most practical ways, we are going to be setting up sustainable systems/teams for specific areas they may need help in during the months to come. If you would like to be part of the crew that helps them on an ongoing basis throughout this year, please be sure to fill out the Help Signup form that is on the “Opportunities to Help” page, and we will keep you informed about the teams that are being organized on their behalf. If you’ve already filled it out, we have all your info, so you don’t need to re-submit. A date has not yet been set, but I do hope to have a “Helper’s Meeting” to gather as many people together who want to be part of these efforts to communicate in person what their ongoing needs are, and how we can provide consistent support over a long period of time without any individuals feeling too great a burden on themselves. More on that soon. Thanks for reading…. – Emily

And now for the update:

Jacob’s Status:
Today has been a really tough day. Jacob had an early appointment at the clinic for blood work, and time in the clinic is often exhausting and drawn-out. This morning Jacob felt really angry and did not want to go to the doctor. That is hard for Sofia, because she understands, but they still had to go. Sofia said they didn’t actually do the spinal procedure (that will be next Friday), but there was a super long wait to get results from the blood work. She said when they got home, she, Jacob, and Lucas all fell asleep for several hours, cuddled close together.

Treatment Plan & What to Expect:
Today the doctors gave them a detailed treatment plan for Jacob as well as information about what to expect. What I have to share right now is very generalized information, but we’ll soon have more specifics to share. Doctors said to prepare for nine difficult months ahead that will include really aggressive treatments. Jacob has been in the first phase of treatment thus far, and after next week, he will be in a recovery phase for a few weeks so that he can stabilize and hopefully his white blood cells will increase. These weeks should be reasonably good/normal for him because he will not be subject to the hard chemo. After that, he will begin the second phase, which will be very tough, and he may have to be hospitalized for the first few days when they start him on a new/different type of chemo. She said that sometime in the second phase he will have radiation treatments in addition to the chemo he receives.

Please Pray:

  • For Jacob to have more really good days. Sofia says yesterday it was nice to see him feel good, and she wants more of those days for him, especially if things are going to get much tougher.
  • For Jacob to not be in pain all the time. Sofia hopes to see him smile more and be able to do some normal things
  • For all of them to be able to work through their emotions in a healthy way as this journey continues

Jacob’s Status:
Jacob did really well today. Sofia said he has been up & around, playing, and was super happy today.  She said his good friend Hjalte came by to play with him and they loved building legos together. All his activity made him really tired, and when I talked to her, he had fallen asleep.

Tomorrow:
Jacob has an appointment to get blood work done, and will have a spinal procedure that is similar to what they did last week. Sofia said they are hoping that ‘everything is at zero’ to confirm that Jacob is responding well to the treatment so far, and that they can continue on as planned.

Please Pray:

  • For the results of the blood work tomorrow
  • For Jacob’s spinal procedure

Moodiness, nausea and some more bruises… but mostly GOOD NEWS!

Jacob has two new bruises (Blue marks) under his skin size of a small egg, this an addition to existing open wounds he starts to develop in his mouth. Today he started to feel nausea and we’ll try and treat it with small sips of water until we can give him the next round of anti-nausea medicine. He was really moody for the last two days (at least against me) but I did spot a smile once yesterday when his cousin made a joke, that single event filled my heart with joy as I think it goes too long between these happy moments nowadays. He still complains of stomach pains but it seems to be mostly related to when he takes his meds which in a way I can understand. We dressed Jacobs (and my own) hair so it’s now ~10-14mm short in our joint effort of trimming down to zero length by the time Jacob loses his beautiful golden prince curls, in a week or so.

Today my mom’s fiancé flew back and tomorrow my brother and family fly back as well. On Friday Sofia’s friend Annika fly in with family and rumors are they have arranged with LEGO Company to surprise Jacob with a hard to get toy (The LEGO death star).

I emailed and asked the hospital if Jacobs’s bruises, sleepiness and moodiness are expected symptoms and also if he is likely to get back his strength and joy anytime during his long treatment. Apparently the symptom are all pretty normal, but it may indicate his platelet count is getting low. He’s coming in tomorrow to clinic and we can then see what his blood counts are like then, he may need a transfusion in the near future.

On the upside, Jacobs’s spinal fluid now has no detectable leukemia, so that’s good news! Bone marrow shows about 1% residual leukemia, also good news. The doctor contacted me tonight with this wonderful update and I had to sit still for a few moments before I could make myself tell the rest of the family. I even double check previous communicated expectations to ensure I didn’t hear wrong and this in fact are the good news we have been waiting for. In my notes I can read the Doctors wanted to see 0% in spinal and less than 5% in marrow, 1% is better than we could have hoped for so we are all very happy about this.

http://www.flickr.com/photos/36414830@N02/sets/72157626116634508/

Jacob’s Status:
Jacob is in a fragile place. Today doctors said his white blood cell count is very low, and he has essentially no immune system. He cannot be around crowds of people, and if he shows signs of any kind of illness, he may have to be hospitalized. He still complains of pain in his stomach, but he does have an appetite–he just doesn’t always know what he wants to eat.

Today:
Today, David went to work, and Sofia took Jacob to the clinic along with Baby Lucas. It was her first outing with both Lucas and Jacob, and she said she was a little flustered trying to figure out what she needed to have with her for each boy when she left the house. That will be a bit of an adjustment for her. She said there are so many hard moments throughout the day that leave her feeling really sad and exhausted, but the moments that Jacob smiles or laughs really pick her up. She had a moment of smiles with all the boys today that was good for her.

Wednesday:
Jacob will go back to the clinic for magnesium and more blood work to be done. If the doctors don’t call them tomorrow with results, they will get the test results from last Friday during the Wednesday appointment.

Please Pray:

  • For Jacob’s test results
  • Strength for Sofia, David, & Jacob – this is just the beginning of a very long journey for them
  • For the sadness Sofia often feels – please pray she would be encouraged each day
  • For Jacob to stay healthy while his immune system is down

Today was a hard day for us… Jacob for the second day in a row have been sleeping way too much.. He doesn’t seem to be happy at all and have twice now expressed worrying’s and had nightmares.. First night Jacob dreamt that “Mom is afraid.. She is not here.. Please daddy sleep where she used to sleep.”, this because Sofia was at the hospital giving birth and had to stay one night to rest.. Next he said he dreamt “first something was good and then become evil… and now I’m afraid..” this is probably because of the whole situation and he somewhere deep inside knows he is very sick.. This breaks mine and Sofia’s hearts.. Tonight when everyone had gone to bed we sat and cried together for a moment.. then I use a good technique that someone closed to me taught me.. I took down our sorrows from the shelf, cried a bit, then put it back there so we can be strong for Jacob.. Today was one of the hardest days for us since Jacob got his diagnose. I do have some nice photos and videos I wanted to share but in the confusion I seem to have lost the 3 or 4 USB cables I have purchased to my new windows phone which means I can’t upload videos to my flickr account or FB / Jacobs web page. We need to find strength but some days things seems much more difficult than others.. today was such a day..

Jacob’s Status:
He’s been sleeping a lot today – more than usual, but they will be going in to the clinic tomorrow to have blood work done to see where things are at. There were some tests done last Friday that they’re awaiting some results for, and those should be in by Tuesday or Wednesday. The Friday tests, in particular, have Sofia feeling anxious. She would like to know that the results are good. She also cut Jacob’s hair short, so as he begins losing his hair from the chemo treatments, it won’t seem as scary for him.

At Home:
Everyone has been home this weekend. Sofia and Lucas came home from the hospital yesterday, and thus far, Lucas has been doing very well. Sofia was very tired yesterday, but a bit more energetic today. They have had a a few visitors here and there, plus family from Sweden that has been staying with them. I think it’s been good for Jacob to have his cousins around. Sofia said she prefers to have people surrounding them, journeying with them through this time.

Please Pray:

  • For Jacob’s clinic visit tomorrow, and for the results from last Friday’s tests to be very good
  • For Sofia’s anxiety about Jacob’s test results
  • For more energy for Jacob
  • For Sofia’s search for a new pediatrician/family practice for their ordinary medical needs – she’s looking to change and would love personal recommendations to great family practice doctors in the Kirkland/Bothell area. If you have one, please get in touch with them.

A lot happened today..check out the previous blog post to see the newest member of the Schaub family. He’s a sweet little guy!

David was at the hospital with Jacob today for the spinal procedure he had scheduled. He was unable to be at the birth, which is one reason why I took so many photos for him. He sent me an email in the afternoon updating me on what happened with Jacob today. It is as follows:

Jacob was really brave today and didn’t say a word when the nurse went in through the chest port (very unusual she said). I don’t have his blood values handy (will try and post something later today with details) but in a nutshell here is the deal: his magnesium is slowly coming back up after we added that as a supplement to his home meds. He is no longer noticeably swollen, he is not much in pain any longer (although the chemo he got today will introduce pain over the next couple of days or week), still no trace of leukemia in his blood, the spinal/bone marrow results will come back Tue/Wed and we want to be below 5% in marrow and 0% in spinal. As for Jacob’s resilience to getting sick, he is now passing a low 500 count on his defense system (the type of white blood cell known as ANC) and he can no longer be in public crowded places until the first round of the treatment is over. Also he is starting to develop wounds in mouth, on finger tips and other places and is more at risk to catch an infection. On the bright side we gave Jacob the last of his steoroids today (for this round of chemo) so his mood should go to a more positive one now. Im general I think the doctors expects more pain and nausea moving forward and some of these mandatory home meds I will now have to start giving to Jacob more and more.

Please Pray:

  • For Sofia to get rest through the night and weekend, and for baby Lucas to stay healthy
  • For Jacob’s discomfort to be minimized during this round of treatment, and for his health to be protected despite his vulnerability during this time
  • For Simon to not feel left out or forgotten with all these events happening around him that he can’t understand
  • For David to get rest and stay positive about the challenges ahead

Sofia gave birth to Lucas Dimitrios Schaub early this morning just before 8am. He weighed 7 pounds, and 9 ounces, and was 20 1/4 inches long. The birth was very quick…I missed it by just 5-10 minutes, but it was uncomplicated, and Lucas is very healthy and as handsome as can be. See for yourself! Scroll down to the bottom to see some breathtaking video of him, and be sure you don’t miss beautiful Sofia and Lucas’ first captured smile in the last photo! Sofia is recovering well, and will most likely go home from the hospital tomorrow. Jacob’s update from today will follow soon.