Header image

Jacobs’s nose tube clogged and had to come out (This time he voluntary pulled it out on the count of three) for replacement. Brave kid, what can I say?

Simon hands out love in large quantities when it’s needed the most. The other day I lay down on sofa completely exhausted, Simon takes notice and leave IPAD for a moment to strengthen daddy with plenty of hugs. I seriously think Simon is the main source of love in this family and we all have a lot to learn from this little character. He has done these things many times before and it’s surprisingly how he takes notice and knows just the right thing to say or do.

Sofia’s dad installed air filters to all furnace air out blows throughout the house to pick up air-born micro dust and bacteria particles that could end up in Jacobs lungs else. This together with the large air-cleaners we have installed will reduce the risk of anything harm our little immune suppressed boy. Also I got my formaldehyde monitor now and will put it to the test.

We got discharged from The hospital yesterday. Jacob was so happy, he even made up a ” we are going home song” and we were dancing. I think he was especially happy about going home because grandma and grandpa had come from Sweden and were waiting at home. Jacob still has a pretty bad cough but otherwise he has been doing good until tonight when he was supposed to go to bed. I was trying to get everyone to bed at the same time as I was acting plumber as our sink got clogged, When Jacob starts to throw up. So out comes the fish sticks he so wanted to eat and the nose tube… This is one of the chemo side effects we until now haven’t seen.
He did great with taking his chemo by mouth, I mixed it with some ice cream and when I told him to take the bite fast and then drink some water he just looked at me and said, this chemo was really good, I don’t need the water. Tomorrow we are going in to the hospital now not only for labs but also to get a new tube. Jacob does not like that at all and I know that he will be upset.

So Please pray for
Jacob to stay calm and not scared to put the tube in
for him to not vomit any more

have three theories, 1. That yesterday’s chest port incident somehow got his
blood infected, 2. His runny nose is accompanied with some virus/bacteria, or
3. He somehow reacts badly to the high dose chemo. We can confirm Jacob got
fever exactly in the hour same time as last high dose chemo treatment and like
then this is not a documented side effect and the hospital confirmed they have
had other similar cases for the same batch of chemo that was delivered from the
medicine company. The pharmacy department called the medicine company where the
medicine company said only our hospital had reported these new symptoms. We
will see if we get more information tomorrow. For now Jacob gets Tylenol to
keep his fever under control. His ANC is 1000 so he will not be put on
antibiotic as Doctors count on his own immune system (What’s left of it) will
kill the virus/bacteria inside him. I just got home from a morning at hospital
and a day at work and can’t wait to get back to Jacob to kiss and hug him (even
though he hates kisses and hugs from Dad and prefer I play Minecraft). :-)

Nothing bad showed up on the X-ray and Jacob is now accessed
and can continue his treatment. As an addition to the blood works that was
taken for labs earlier today they also has taken a sample from inside his nose
to get an idea what he might be carrying with his runny nose and cough. Jacob
is sleeping tight and Sofia and Lucas is on their way home (Simon stays with
Anna), I’m ready for bed time myself after a long and exhausting day. Good

Jacobs blood values from Friday was good and he got approved
to be admitted for round 2 of the high dose chemo (same as last time) and he is
now “strapped” to his bed for a few days, this time in isolation since he hasn’t
get rid of his cold he caught a few days back. Everything went okay yesterday
and this first night. This morning Jacob tried to get out of bed on the wrong
side and fell badly ripping off all tubes going into his chest port and central
vein. Before I could run out and get the IV team’s attention me and a nurse had
to rapidly stop the bleeding minimizing his blood being compromised which can
lead to bacteria’s and infections. Everything happen within seconds and the
nurse first (with glows) could put pressure against the tube sticking out of
his chest so nurse no 2 could then replace it with a little clip they found
while I ran out in the hallway screaming like from one of those hospital TV-shows:
With IV team in the room (again everything here happens within seconds/minutes)
they explain they need to re access his chest port right away and do two things
1. Pull blood and send to the lab so they can look if Jacobs’s blood has been compromised
and infected during the few seconds of external exposure, 2. They need to
inject fluid that will prevent his blood from clog as he has a long tube down
to his heart that can’t be obstructed as that would be very serious. At his
point there is no time for Jacob to get the pain killer cream that usually we
put on 1 hour before port access, Jacob gets very scared and asks about the
cream where we tell him there is no time and he has to stay brave and go
through this without pain killer. The IV nurse takes a new port and tries to re
access Jacob but something isn’t right, there is no blood coming out and
nothing goes in either starting to worry me a lot since last time this happened
we ended up with a missing tube ending up in on of Jacobs’s heart chambers. Jacob
isn’t in great pain during the attempts to access the port and is very brave
when she takes the needle through his skin twice. The second attempt seems to
work better and now she is able to pull blood but Jacobs’s starts screaming in
pain… She tries again but Jacob is clearly in pain when fluid is passing his
chest port. We don’t know what’s wrong and I explained to the IV team about
last time when we ended up in many hours in hear surgery due to a bad port
access incident. I explained that Jacob is being access often and if he says it’s
hurt its real and needs to be taken very serious. Last time Jacob was the one to
bring to our attention the early symptoms that the chest port was missing; he expressed
the pain and made the nurse aware of the fluid creating that big bubble under
his skin up his neck. I explain all this to the IV person and asked for them to
get the Doctor and schedule an X-ray right so they can look inside Jacob confirming
everything is in place as it should.
Jacob is going into X-ray the next couple of minutes and we
will see if he is okay or not.


Between hospital visits there are good times with siblings and friends. Here are a few photos from past 3-4 weeks: http://www.flickr.com/photos/36414830@N02/sets/72157626869645503/

In the Escalade

It’s so nice that we are all home again. It’s exhausting to be at the hospital. I can see that Jacob is still tired and his hematocrit might be going down as he has these dark circles under his eyes but he is so happy to be home, when he woke up he could not wait for Simon to wake up, he ran into his room shouting ” let’s play Simon!”

Last Sunday when me Simon and Lucas got home, the house felt so empty, I sat on the porch watching Simon play and I felt Jacobs absence.
I hear them now upstairs, jumping talking playing and laughing once in a while fighting too.  I can’t help the tears falling as I wish they will always have each other. 
What a relief it was yesterday when the nurse came in and told us that Jacob cleared the chemotherapy, his fever was also gone by yesterday morning. 
They took him off the bloodpressure medicine,  his bloodpressure was a bit low, it is now normal and we are hoping it stays that way so we never need that medicine again.

The fever Jacob developed yesterday continued overnight and at 38.6 the nurses called the Doctor on call. Jacobs was shivering and complaining about being cold. In an attempt to offer comfort we gave him heated blankets and bumped up the room temperature. The Doc gave Jacob two types of antibiotics and sent blood samples to the lab for analyses. Shortly cold turned into heat and Jacob now warm all over threw off blankets, opened his shirt and asked me to take down the temperature in the room to cold (which I did). The nurses provided icepacks for Jacob to hold on to as well as cold bandage over his head.

At one point in the night Jacob was a bit moody of all the action and decided to refuse to pee which made nurses concerned and they explained that the high dose chemo in Jacobs’s bladder had to be emptied or it could start causing serious damage inside his body. We tried to explain he must pee but he refused. I had to promise Jacob the King Pig from Angry Birds online store to convince him peeing was really a good idea. It worked (Smart kid).

Today I spent most of the day in the hospital kitchen area working as Sofia and Lucas played with Jacob in his room. Simon stayed with Anna and her family. The day ended with good news, 1. Jacob’s ANC level is ~2000 which is a 100% increase since Friday demonstrating bone marrow being effective in producing white blood cells and strong immune system. 2. The spinal fluid Cytospin lab results came back CLEAN meaning no trace of cancer or other bad stuff was found in Jacobs’s central nerve system.

Time for bed, Jacob still has a fever, actually went up to 38.7.

The day ended well overall.

Let’s hope for a good night’s sleep for both Jacob and myself.


Here are todays video clips and a photo: http://www.flickr.com/photos/36414830@N02/sets/72157626905360182/

Last night was tough… after the high dose of chemo numerous other
infusions had to happen and with constant flow of fluids through Jacobs’s body he
had to get up once or twice every second hour to visit the little boy’s room.

This morning we got the early lab results back from Friday’s
back poke where a single drip of spinal fluid was collected and examined for evidence
of cancer or anything that isn’t supposed to float around in the spinal fluid right
next to the central nerve system. They didn’t find anything abnormal which was
a great relief for us and we are very thankful. Now testing a single drop of
spinal fluid isn’t enough when you’re looking for a needle in a haystack so a
more extensive lab test called ‘the Cytospin’ is under way and those labs will
be available tomorrow. A Cytospin is a centrifuge that takes a much larger
amount of spinal fluid and as it rotates heavier particles such as cancer cells
would get separated from the pure spinal fluid and become detectable once
enough of them groups up in one end of the lab tube. Tomorrow we want those lab
results to come back CLEAN.

After lunch today Jacob suddenly got tired and started to
complain about headache. He developed a slight fever and we measured up 38.1,
38.2 and 38.5 before they gave him some pills to cool down. If the fever gets too
high tonight they will put him on antibiotics but as long as it’s not sky
rocketing he should be able to fight it himself considering that he is
currently not low on his ANC counts.

Anyway it has been a long day and we have all been kind of
exhausted, moody and tired today although Jacob and Simon had a few moments of
fun running around in the hospital hallways and playing with their IPADs.


Here are some video clips and photos taken from my phone: http://www.flickr.com/photos/36414830@N02/sets/72157626896750072/

After weeks in recovery our little champ finally got approved
for continued treatment as his white blood cell count passed the ANC 750 mark (he
scored 984 compared to 166 last week). Yesterday started with the back poke (where
they check the spinal fluid for signs of leukemia as well as doing the direct injection
of chemo to his spine). This morning he got admitted to Children’s Hospital (Giraffe
floor 3, SCCA) where they hooked him up to the infusion machinery for his high
dose of chemo which will keep him hospitalized for up to a week with 24 hours
monitoring as they “bring him back” as well as evaluating potential damage to
his inner organs caused by the needed high dose of chemo.


Here are a few video clips of Jacobs’s day: http://www.flickr.com/photos/36414830@N02/sets/72157626762413259/