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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

Jacob is doing really well this week so far. He went in to the clinic today and his counts are getting better. He did not need a blood transfusion, and he seems happy. He says he has belly pain and nausea from time to time, so his appetite also comes and goes. He will begin another stretch of chemo on Friday.

Please pray:

For his belly pain to subside, and for him to continue eating well
For the whole family to stay healthy

Jacob’s status:

Last week was very positive for everyone, as Jacob was between cycles and was feeling really good. He started the next round of chemo started yesterday. Yesterday was super busy, as they had several appointments throughout the day. Today was a little more relaxed, and Jacob had one long (5 hour) appointment for the largest of his infusion in this 5-day cycle. He will have three more days of shorter infusions lasting 1-2 hours each.

As of now, Jacob is still doing ok, but the doctors say it will catch up to him in about a week and that’s when he will start feeling really bad. They received the schedule for the next month and what will happen with Jacob’s treatment.

Sofia said Jacob’s magnesium level and blood pressure are a concern again.

Please pray:

  • For Jacob’s magnesium levels & blood pressure to normalize
  • For Sofia to stay focused on Jacob’s recovery and not let negative thoughts in
  • For Jacob’s hard days ahead, that his pain and discomfort would be minimized as much as possible.

Sorry it’s been a few days since the last update!

Jacob’s Status:
Last Friday, Jacob went to the doctor for a blood draw and spinal procedure to check out the status of the bone marrow and spinal fluid. Jacob’s doctor called today with the results and said the values are at zero which is what they want. It means there is no leukemia in his bloodstream, and they can proceed with treatment as planned. This is good news, because it means the treatment is working. Jacob’s blood pressure has been high, and it is still high, and the doctors want to find out why. They did an ultrasound of his kidneys today, and it showed that one kidney is back to a normal size, but the other one is still enlarged. It has improved a little since the last time they looked at it, but it’s taking longer, and is possibly responsible for Jacob’s high blood pressure, but they’re not sure. He will be seeing a kidney specialist this week, hopefully on Wednesday, to check it out a bit more.

Tomorrow Jacob has a dentist appointment and then a test administered by a brain doctor that will establish a baseline for his brain function before radiation treatments begin. This will help them determine/evaluate the effects the radiation has on him.

He will go in on Friday for blood work, and if all the numbers look good, they may start him on the next cycle of chemo as early as that day, which will usher in a really tough few weeks for them.

**They have also decided that they cannot have children over to visit Jacob until his immune system is more stable as they cannot risk him being exposed to any illness whatsoever. If you’re planning a visit to see them, please leave your children home, or check in with them before you come.**

Cleaning Team?
I will be going to the Schaub’s home on Saturday, March 12th from 1-4pm to clean, and if anyone would like to join me, I’d love to have a small team of people there so we can be thorough and quick. Sofia won’t know what Saturday will look like for them, since they’ll determine Friday if they start the next round of chemo, and if that happens they’ll be at the hospital for a few days. If they don’t begin the next round, they’ll be home. Whether they’re home or at the hospital, I think their home needs some scrubbin! Let me know if you would like to join me: Emily – (206) 414-9628.

Please Pray:

  • For Jacob’s blood pressure & kidneys – Sofia is really concerned
  • For Sofia to be able to stay focused on the good things that happen and not the bad things
  • For Jacob to be able to stay healthy while his immune system is down

Today:
Simon went to preschool this morning. David is still staying with a friend because he’s not well, but he’ll come home tomorrow to go to the hospital with Sofia, Lucas, and Jacob for Jacob’s appointments tomorrow. Sofia said today Jacob has been in a really super good mood. He woke up this morning and asked for Simon, so the boys piled into Jacob’s bed and played with the iPad together. Sofia took some cute photos of them together, and said she’d share them later. Before this week, Jacob didn’t want anyone to be close to him or touch him, so it was heartwarming for her to see them play together, and have a good time. Jacob has also started taking an interest in Lucas more, and makes comments about how he’s so cute, and that he loves Lucas. Sofia said he hasn’t held the baby yet, but he likes to touch him and look at his fingers.

This evening Jacob & Simon took a bath together and played in Jacob’s bed again. Sofia said they were laughing and playing, and great to see that. Jacob has also been moving a lot better (walking and almost running, not super fast, but he’s really starting to regain some of his strength and motion). He still struggles when he has to go up the stairs, but he doesn’t complain.

They have been building more on the LEGO Death Star, but they still have a lot left to do.Today, a woman who lives nearby knocked on the door, and brought Jacob two Costco hotdogs by surprise, and Jacob loved it.

Sofia also had a chance to see her friends Anna and Dashka, which was good for her, and they brought some really wonderful teas that Sofia is eager to try.

Tomorrow:
Jacob has a blood draw in the morning, and then a spinal procedure to check on his bone marrow. He can’t eat anything until after the procedure, which I think is somewhere around 11am.

Please Pray:

  • For continued good days
  • For the procedure tomorrow, and for the results from the procedure to be very good
  • For Jacob to do well with having to wait to eat until later in the day

Jacob has been in a really good mood today. Sofia said he has been building legos, and feeling really well.

David is staying at a friend’s house because he’s not feeling entirely well. The friends they have had staying with them from Sweden are also staying in a hotel tonight because they are also feeling not 100%, and no one wants to risk exposing Jacob to any illness.

Sofia said she received a large box today from the place she worked at when they lived in Copenhagen. She was really surprised and touched, as its been several years since she worked there, but they sent all kinds of wonderful things including beauty products (from the company she worked for), presents for the kids, swedish and danish candy, and even some danish beer for David. It really warmed their hearts.

Sofia also related a bit of a conversation she had with Jacob today. He told her that when he gets mad like he sometimes gets, its because he’s really really tired. She says he is really thinking about things and is trying to communicate how he feels, which comforts her.

Sofia’s friend Janna came by with a blanket and pair of socks someone made for the baby which was really sweet, and another family from Jacob’s school came by to visit Jacob & Simon which was nice also.

Please Pray:

  • For David’s health so he can return home
  • For everyone’s health to remain good
  • Sofia said she wanted to be sure to give thanks for all the good things, and for the answers to prayer

Jacob’s Status:
Today was really long day for Jacob & Sofia. They spent all day in the clinic beginning from 9am and didn’t get home for the night until after 8pm. Jacob had a blood draw accessed from his port, which is a little uncomfortable for him. He has been super brave and although Sofia can tell that he is scared, and she sees tears in his eyes, he doesn’t complain or interfere with what the doctors and nurses need to do. The last few days he has been wanting hamburgers to eat, and yesterday had a special request for a Costco hotdog. Sofia says his very specific requests can sometimes be hard, but she is thankful that he is eating something.

His immune system is really at zero right now, so right now they have to be especially careful that Jacob is not exposed to germs and illnesses. This afternoon he had a blood transfusion, which went well, and he did not have to be hospitalized (which is sometimes a risk with transfusions). They are now home, exhausted and in need of rest. Sofia said the time in the clinic is very hard, even though they’re just sitting. She also said Jacob has been complaining of belly pain more often today.

Sofia said that this situation is difficult for all of them, and she is especially struggling to be able to express her feelings. She also doesn’t know what is going on in Jacob’s mind, and she worries that he feels scared and alone. She said she is holding on to the promise that God is with them through these tough circumstances, and is trying her best to let go of the stress, and be in the moment as much as she can.

I chatted with her about possibly gathering some uplifting/inspirational books for her to keep with her for the long clinic days. If you have a recommendation or if you’d like to get a specific book to her, I think she’d love it.

Please Pray:

  • For Jacob’s belly pain to go away
  • For Jacob to feel strengthened, loved, and not alone
  • For everyone in the family to know how to sort through and express their emotions in healthy ways

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