The Doctors were sucessfull with removing the 2dm long tube that had ended up inside one of the heart chambers. Jacob had a nights rest and is now back in the OR for a new surgery to install a new port and tube so he can get back on his chemo meds ASAP. Thanks everyone for support throughout these hectic 2 days. I will share some photos of our little hero when he is back home safe.
During surgery doctors couldn’t find the lose pieces that showed up on X-ray and they have now confirmed pieces of Jacobs chest tube (all of it I believe) went into his heart and is now stuck there. They have given Jacob extra sleepy medicine since surgery will take longer now and a special doctor has been called into the hospital. We talked to the doctor right before he joined the team already in the OR and he said he will attempt to go into Jacobs heart with a lasso and pull the tube out.
Jacobs chest port has been displaced. The underlying tube from his chest port that was suppose to go to his heart has came out and is now sitting twisted displaced inside his chest somewhere. Doctors don’t know how it happened but has schedule Jacob for urgent surgery today to inspect and remove the old port, tubing, etc and install new on same side or the other side if they are afraid risk for infection is too great. Main concern now is the risk of infection when going into surgery and also how did this happen in the first place and is the displaced tube intact and no loose pieces of plastic or clogged blood enters the heart chambers or get flushed out in the lungs puncturing something. Jacobs chemo treatment will be put on hold for at least 24 hours but we are fortunate that Jacob didn’t have anything to eat this morning due to his planned infusion and is now eligable for emmidiate surgery. We are all pretty exhausted and none of us have had breakfast, lunch or dinner today.. I will provide an update as soon as I know more.
Jacob is still in a surprisingly good mood and we cherish every single day as we know the “good times” will soon end and within a week or so Jacob is likely to start showing signs of increased pain, nausea and tiredness, all things that his Doctors has prepared us for. I can’t help to feel scared for how Jacob will feel and how we will react to this. Sofia had a horrible nightmare yesterday and felt very bad about it half day today as the dream involved her also being sick with cancer and she described to me how she felt she was about to die with her son side by side before actually waking up realizing in a somewhat guilty way her worst nightmare was in fact Jacob current reality, with the exception he is far from doomed and has good chances to beat this beast (~80% in his case). I read somewhere that in UK the same diagnose would have meant a ~70% change of survival due to longer wait times in the medical system and also with greater distance to the US based research that is happening here, so in a way I have to say things could be worse and I am somewhat fortunate to have relocated to US right in time with great health care coverage provided by my employer to help Jacob get the best Doctors there is.
Although I get my fair moments with Jacob each evening after work I do have some trouble reaching out to him in the way I really would want to and each time I try and get a hug or kiss he respond with a fist and some sort of vocal rejection (unless I offer to play LEGO or something with him which is what I end up doing from time to time to get some “quality” time with my son). Doctors say it’s a very normal reaction that sick children pick one parent over the other, I can still see in his eyes that he knows he is loved and with the smile he present to me in conjunction with his furious fist I know he loves me back. Compared to the early days of his treatment when he was taking steroids his current mood swings is considered nothing.
Up until now Jacob has only got chemo treatment once a week… As he now starts his second phase (9 months) his actual chemo dose has been bumped up to 7 days a week where 5 of them will take place at the hospital we will also continue to give him chemo orally throughout the day from home. In his second phase day 1 to 64 is going to be hard, so hard that Jacob will from time to time get temporary hospitalized a few days. Then after day 64 things are apparently supposed to get even worse and include very aggressive chemo from time to time provided through up to 12 hours infusions where Jacob has to be hospitalized and put under close 24 hour surveillance as his critical body functions and organs will have to be monitored at all times.
Jacob starts to ask us a lot of questions about his sickness and wants us to explain exactly what cancer is, what the difference between his cancer and other people’s cancer, how his chemo medicine works and what the negative side effects will be. We basically present things for Jacob in the order things starts to show or we know are just around the corner for him. This week he started to fumble around more than usual and falling more often which is because his nerve system in his legs is temporary shutting down and the classic “knee effect” is no longer working, you know when a Doctor takes a rubber hammer and hit your leg at your local clinic “for no good reason”.
Some new video clips: http://www.flickr.com/photos/36414830@N02/sets/72157626173397211/
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.
- 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.
Last Friday we went to the hospital to see if Jacob could start next phase of treatment. He couldn’t because his ANC was not up at 750. It had got a lot better just in two days from 175 to over 500, but not enough to start the treatment. It will most likely start next Thursday. This gave us instead the opportunity to spend a few days together when Jacob is feeling well. He has energy and he is happy. Things are almost normal, except of all the medicines and his NG tube, today we had a “normal” day, we took a trip to IKEA, had meatballs an bought some things. I was wondering what people are thinking when seeing us…and this little boy with a tube in his nose… I’m so thankful for these days we have until Thursday, this is not only a recovery phase for Jacob but for all of us i think, especially me, seeing Simon and Jacob playing and seeing both Simon and Jacob happier. I watch my two beloved boys together, as they are supposed to be. Jacob needs much less help with things, makes me have some time to do other things. I will try to enjoy these days, I’m a bit scared to think about Thursday and the 5 following days going back and forth to the hospital, intense treatment and not knowing how Jacob will feel.
After 29 days of treatment Jacob now shows 0% leukemia in blood, spinal fluid and also bone marrow as far as what can be measured. This is super great news and better than what was expected… We are really happy about the results and are now getting ready for the next treatment phase that Jacob will start once his ANC level is up at 750 (Was 172 Tuesday this week). We hope that Jacob will recover fast to the level 750 mark so he can soon start chemo again (As Doctors say leukemia can still be hiding and waiting to mutate and come back). This next phase is going to be the by far worst one with sever nausea, bone pains, hair loss and moodiness. We will all have to be strong for Jacob and be at our bests now to support him through this long difficult period. After the 9 months he will do radiation and then another ~2 years of chemo.
I’ve been spending more time going back at work leaving me somewhat exhausted in the evenings. We also have had Jacob meet the brain Doctors who have conducted a bunch of tests on him, today they gave us a preliminary report on Jacobs’s intelligence level (to get a baseline for his upcoming radiation later this year). The idea is that they will base line him now so they can see the possible negative effects his treatment will have on his IQ and future ability to learn things. The brain Doctor says Jacob is a very smart little boy with the only exception to his English skills. Of the study of healthy children’s in Jacobs’s age he scored way above average on most items and below are some notes I took today over the phone:
Problem solving / Finding patterns: He’s in the top 2% group
Fast thinking: He’s in the top 4% group
Memory: He’s in the top 20% group
Motoric (hand) skills: Above average
School language and shapes: Good
Math: He’s in the top 10% group
THANKS TO EVERYONE FOR THE SUPPORT AND KIND WORDS, THOUGHTS AND PRACTICAL HELP WE HAVE RECEIVED!!
More photos here: http://www.flickr.com/photos/36414830@N02/sets/72157626241996962/
Sorry it’s been a few days since the last update!
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.**
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.
- 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
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.
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.
- 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.
- 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