Header image

Davids Reflections Feb 10, 2011

Posted by david in From David & Sofia - (6 Comments)

7:30 AM – Jacob wake me up as he wants to pee… I realize we both slept through an entire night without any pee breaks, medical equipment alarms or nurses/doctors coming in and out to check vitals.
Jacob wants to go for a ride in the wheel chair, I can’t believe my ears… after yesterday’s painful events and Jacob locking us out with no signs of wanting to interact, eat or even look at us he now actually communicates with me and have a wish to explore the hallways of the hospital.
Next, Jacob sit only a few minutes in the play room when he tells me he wants to eat, my mom and fiancée shows up with a gigantic burger that Jacob has no problem eating half of before going back to sleep.
The sleepiness hasn’t really changed today but Jacob doesn’t appear to be sad to the same extent as yesterday. He seems to be… just very tired.
Time for morning round and like previous mornings the doctors gathers around Jacobs’s bed as they have done so many mornings since that Thursday a week ago when we arrived to the ER of Seattle Children’s Hospital with our son vomiting blood, kidneys values 4 times higher than normal and a white blood cell count of 70 thousands per micro milliliter (the day the worst nightmare of my life started)… At least 7-8 of these highly qualified doctors all focused on Jacob talking and taking notes and planning for the next couple of procedures and name dropping vitals data I still haven’t mastered and I can’t help to think about the many Greys Anatomy episodes my wife had me watch late nights… Anyway to the good news.. JACOB HAS 0 (CERO) CANCER CELLS IN HIS BLOOD STREAM!! I can’t believe what I hear… They say that as far as they can measure there is no more cancer in Jacobs blood… 1 week since he came in full of them they are now all gone.. 1 week from 70,000 to 0 sounds super great in my ears and Jacobs’s doctor say this is a good sign and considered a good data point in determining how successful the chemo treatment has been. Tomorrow afternoon Jacob will go into the operation room where they are to check the spinal cord and bone marrow to see how successful the chemo treatment has been there. Although I realize not being able to measure cancer and actually have had eliminated cancer in all its forms in all hidden corners of the body is two totally different things. Cancer cells can hide for years and return mutated and stronger and this is the decease that has been haunting my family and close relatives for many years and I know todays happiness is a good sign but Jacob is still to go through ~3 years of heavy chemo in conjunction with one or more radiation treatments and possible bone marrow transplantations, meds, etc.
Jacob sleeps 95% of the time all day until afternoon when his best buddy Hjalte shows up. Jacob is from that moments lying with his eyes opened and watch his friend play with Lego. After a while Sofia and Simon shows up in the room and Jacob’s eyes starts showing signs of tears and he has clearly missed the other half of our family that slept in the house tonight. Its true a family has to stay together to be strong, the next couple of years this will be more importantly than ever for us.
On a side note we have meet a couple of fantastic people that has gone through so much pain, just like us and I admire the strength I see in these people. I am sure I will grow mentally over the next few months so I can be there for my family and provide the support they.
Today we also started to sign the needed paper work to prepare for harvest, test and storage of Lucas stem cells for the unlikely/unthinkable scenario that Jacob’s DNA tests that will come back in a few days presents some really bad news. We would then need stem cells to repair Jacobs’s core blood producing system and also keep them around long term in case for any future relapses.
We also need to prepare testing Simon for a bone marrow match as each sibling has a 25% chance to be a perfect match and if Lucas isn’t our hope goes to little Simon.
Today I practiced how to take Jacobs pulse and learned what trends I should be alert for. I do this since I know there is a day when we will take Jacob home and part of his treatment will have to be from home and I would then need to watch over my son. I started to check online for buying a stethoscope and learned there is a whole industry selling these and I have to ask my doctors friends what brand is needed or if I should buy one of these electronic devices that can sound an alarm when certain thresholds are being passed.
The search for health plans for Jacob who is classified child with pre-existing condition has started. Although I have my family covered 100% through my employer today I can’t help to feel it’s my obligation to ensure Jacob has his own coverage not tied to me as no one can predict the future and Jacob needs a 100% coverage over the next ~20 years or so or whatever the relapse risk time frame is.
Cleaning service for our house to protect Jacob’s low immune system when Sofia will carry around our new born is also something needed to be setup. I also been told we should be careful bringing Jacob to malls or grocery stores and also clean all fruit carefully before cutting it with knife as bacteria’s can be brought into the fruit else. Also the nurses has been good at reminding me a burger lying on a table for a few hours should be thrown out and not put back in the refrigerator for later use (Jacob has had a lot of burgers sitting uneaten the last few days).
David is signing out… for the first time since last Thursday I feel there is hope.

Link to todays photos and videos: http://www.flickr.com/photos/36414830@N02/sets/72157625897899605/

Daily Update 2/10/11

Posted by the Allens in Daily Update - (2 Comments)

Jacob’s Status:
Everything is going in the right direction. Sofia said the latest news from the doctors is that the count of white cancer cells in Jacob’s blood is down to zero. This is a huge victory. This does not mean there aren’t still cancer cells elsewhere in his body, and his bone marrow may still act as though there is cancer throughout, but it is very happy news that means the treatments he has had in the last week have been very effective. Jacob still has some swelling, and they are still waiting on the test results to identify the mutation, which will not come for a few more days. Jacob was awake more today, and the nose tube seemed to bother him a little less. He ate some, and cracked a joke that made Sofia smile. He seemed a little lighter-hearted, although he didn’t speak much. He seems to prefer gestures and not talking. Sofia asked him if it hurts when he speaks, and he said yes, which would probably account for his quietness.

What Comes Next:
Tomorrow Jacob will have a procedure at 2:40pm that is some kind of spinal treatment. While they’re doing the treatment, they will also check some of the fluid to see where its at.

Sofia’s Day:
Sofia had her first ‘normal’ day today since Jacob’s diagnosis one week ago. Last night she went home to be with Simon, sleep at home, and run some errands today. She said it felt good to be reminded of the world outside the hospital. She visited her doctor and discussed the current situation. She received all the important information she will need if she has to go to the University of Washington’s Medical Center to deliver, but as soon as she suspects labor signs, she may try to go to the hospital she’s registered at in Kirkland. While she was home, she made swedish pancakes for Jacob. When she came back to the hospital, she brought Simon with her. Simon is doing pretty well in spite of the events of the last week, but he asks lots of questions and Sofia said she’s trying to explain everything to him in a positive way. They had some presents for Simon at the hospital, so he was excited about that. Sofia also said that David slept really well last night, which is an answer to prayer!

Sofia also shared a story about a woman she didn’t know who came to their home early this morning (another mom from the boys’ school). This woman didn’t know about the website or the efforts others have been making to support the family, so she had come to bring groceries and see how she could help. Sofia said it was a special time and that they cried and hugged. Sofia was touched.

Visitors:
I actually forgot to get a list of people who visited today, but I do know that Jacob’s friend Hjalte came again and Jacob loved seeing him.

Please Pray:

  • For the spinal procedure tomorrow – that it goes smoothly, and whatever news comes of checking the fluid is good
  • That Jacob’s results continue to get better
  • For Jacob to feel safe and not scared, and for wisdom for David & Sofia to be able to explain things to him in a way he can understand
  • For them to know how to meet his personal and emotional needs while he goes through this
  • For all the family to have peace, good conversations where they can talk out their feelings, and move forward together

JACOB (random photos/videos), Feb 9, 2011

Posted by david in From David & Sofia - (4 Comments)

http://www.flickr.com/photos/36414830@N02/sets/72157626016619634/

Today Jacob didnt eat anything. He clearly dont like his new tube down his throat. At least he cant refuse the meds anylonger.. now its only the food we are battleling.. the idea is that he should eat using his mouth (as usual) and take only meds through his tube. If he refuses to eay through his mouth the nurses says they will order medical food that they will press through the tube which more or less takes away any options for jacob and I am afraid that can be a bit depressing for him and potentially give a feeling of complete 100% decouplement from his real life. The good news is his kidney effeciency that is showing good values now. also his swollowness is starting to slowly go down. he has slept all day long and not spoken a word and a lot of us has been concerned and felt some depression signs coming from jacob. I am alone with him now in our hospital room and have talked to him a lot and I see he is listening allthgouh he dont say anything back. this last hour I can though sense a little bit of hope as his eyes opened up more widely than earlier today and he seemed honestly a bit interested in what I was saying. He decided to try and eat but ended up only holding the burger a couple of times before falling a sleep. he did drink some milk though which is at least something. tomorow I think he will be in a better mode. Jacob has a red/yellow mark on his neck and we were a bit afraid it would have been an infection.. but now the doctor say she is very certain its just a bruise and that it will be gone in a few days. david out, very tired and will finally go to sleep in reasonable time. sofia went home to Simon..

Daily Update 2/9/11

Posted by the Allens in Daily Update - (1 Comments)


Jacob’s Status:
Today Jacob was very tired and spent much of the day sleeping. There is not much change in his condition, and his numbers again are the same or a little bit better than yesterday.

What Happened Today:
Jacob got the tube in through his nose to deliver his medications directly to his stomach. He has been complaining about his throat being sore because of the tube, and has not been happy about it. He did get a new hospital bed that is much fancier than the previous one. Child Life, a service available through Seattle Children’s Hospital came to explain what Jacob is going through in ways that Jacob can understand. They try to help kids by teaching them about their condition in age-appropriate ways.

Sofia has been sad about seeing Jacob struggle with the nose tube. Before, even though they had trouble getting him to take his medications, at least he could give his consent. Now that he has no choice, she feels sad that there are no moments of Jacob’s cooperation to look forward to. She said this morning she woke before Jacob and started her morning by browsing through all the comments on the website, and she plans to start every morning this way because it encourages and strengthens her to read everyone’s comments and prayers. Please feel free to continue leaving your thoughts, prayers, and words of comfort. They really mean a lot right now.

Who Visited:

  • Alfonso
  • Benjamin
  • Kolby & Emily
  • And Lyndal was planning to bring a meal for them.

Please Pray:

  • For Sofia’s night at home tonight. She is anxious about being away from Jacob, but is excited to see Simon. She has an OB appointment tomorrow.
  • That Jacob would get used to the nose tube and be able to eat and drink well

Davids Reflections 2/8/11

Posted by the Allens in From David & Sofia - (2 Comments)

From David:

It’s a roller coaster with this disease and stubborn little boy that won’t take his meds

Jacob hasn’t been eating his oral meds today… But he has to, if he doesn’t he will not be well. I keep telling Jacob he will die if he doesn’t take them but he doesn’t listen and it’s like he doesn’t fully understand the seriousness in the situation. Sofia had to take me out for a walk to remind me he is just a little 6-year old boy that doesn’t understand why he is going through all this pain and didn’t ask to be in this situation in the first place, he didn’t choose this life, it just happened. I love him so much and just want to see him get well and can’t wrap my head around the crazy behavior to say no to medicine that will save one’s life. Today’s struggle ended that we had to install a tube into his nose down his throat and feed him through that over the next couple of weeks until we can attempt to go back and try again. Jacob’s body is changing very fast, he has gained weight and many of his body parts are starting to look abnormal and swollenness is spreading rapidly, so rapidly that we were nervous he wouldn’t be safe overnight and I had to persistently ask the nurse get the doctor to check up on Jacob as he did and promised to keep a close eye on him overnight until the morning staff will come in. Today Jacob had to go through a lot of pain and cried like a little baby during the many attempts to feed him and the final installment of the throat tube. I will carry with me for a long time these painful moments he had to experience. I know all of this sounds like bad news, and in a way it is since no child should ever have to go through forceful medication, chemo, blood transfusions, surgeries, painful toilet visits, back pains, skin wounds, etc.. I need to share the good news. There were good moments today where Jacob had fun with his friend Hjalte and their stick books and also my friend Alexander (who is taking Jacob through many fun apps on his IPAD) has been really great for Jacob. Laughs were defiantly in the air a few times today and for a moment or two Jacob was again a little cheerful boy like nothing had happened to him. Best news has to be his blood values and what started Thursday as a 70,000 (50% blasts) count on white blood cells per micro milliliter is now down to ~2,000 (9% blasts). Also his kidney value is now down to 0.8 which is almost normal. Unfortunately we got the Ultrasound results back and no change was observed in the size of the kidneys and I hope they will back down to their normal size soon. On Friday Jacob has his next surgery and we will then take spinal tests to see how much his white blood cell “blasts” count per micro milliliter will be since last test (he had 35 when he was tested before and yes it’s not in the thousands, apparently values are much lower in the spinal fluids than in the blood stream).

I left Sofia and Jacob sleeping at the hospital and I am now going to give my other little son Simon a lot of hugs before I sleep. Tomorrow I want to sign all paperwork for the cord blood from Lucas as we feel we have a good decision on what company to use for freezing in Lucas stem cells.

Daily Update 2/8/11

Posted by the Allens in Daily Update - (1 Comments)

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

David’s Reflections – 2/7/11

Posted by the Allens in From David & Sofia - (0 Comments)

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.

Daily Update – 2/7/11

Posted by the Allens in Daily Update - (2 Comments)

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

Posted by the Allens in General News - (2 Comments)

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.