Axel’s Story

Site created on November 6, 2018

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Our son Axel has been undergoing treatment for a serious condition for approximately a month.  The following is an explanation of that condition and how things have unfolded these past weeks.

Both boys came down with what we thought was a nasty virus that was making its way through Brookings in early
September.  Tycho ran a fever for 3 or 4 days and then was fine. Axel started running a fever the following week and we thought it was the same thing, but his lasted about 6 days longer.   We noticed that he had developed a very swollen lymph node under his arm and his stomach was getting kind of hard like he was bloated as well so we took him to the doctor. They drew blood and ran some tests and said to watch the lymph node, but nothing was too concerning at that time.  There was a lot of viral stuff going around. He wasn’t getting any better after a few days so they put him on an antibiotic.

While the course of antibiotics were run Axel remained lethargic and generally under the weather.  After the antibiotics ran out we took him in for follow up. Since he wasn’t responding more blood work was done and an x-ray of his stomach/chest was taken.  The x-ray showed his liver and spleen were both enlarged and the results of the blood tests were concerning. His platelet count was 9 (a healthy person is 140-400), so we were transferred to the Sanford Children’s Hospital (the Castle) located in Sioux Falls.

We were checked into the Castle Friday afternoon and he was started on IV fluids right away while we waited to hear why we were there.  After some more blood tests, x-rays and visits with the Doctors we were informed that he has leukemia.  Being Friday afternoon we would had to wait until Monday for the appropriate personnel to be back at the hospital in order to perform tests determining what type of leukemia he had as there are a number of different types.  

It was the longest weekend of our lives.  There we sat all weekend in the hospital with a scared baby hooked up to all kinds of tubes and cords away from his family in a strange place trying to keep him calm and comfortable when we had no idea what was really

The following Monday morning, October 1st, Axel underwent a bone marrow extract.  We received the results late that afternoon that Axel has PRE B-CELL ACUTE LYMPHOBLASTIC LEUKEMIA (ALL).   ALL is the most common and curable leukemia with a 95%+ survival rate. The likelihood that he will lead a life free of related determinants after being cured is equally good.  

The next day Axel had a port implanted into his chest to more easily administer fluids and medications and do remove the IV from his hand.  A spinal tap was also done at that time in order to administer chemo therapy and extract spinal fluid to test for leukemia.  We spent 11 days in the hospital from the time of his initial diagnosis.

Newest Update

Journal entry by Jackie Toft

Axel has been doing great!  We are in the delayed intensification phase of treatment right now, which is basically repeating the first phase we went through right after diagnosis.  This phase is supposed to be very intense and knock him down, but to this point he has done quite the opposite.  He was on steroids again for the first couple of weeks which is almost worse than the actual treatments....2year olds in themselves are unstable and crazy.... on steroids are almost unbearable at times!! But since being off the steroids, he has been full of energy, has gained his weight back (and then some), is happy, eating, playing and his numbers all look good.  Everybody reacts differently to the treatments and medications and we are lucky that he is reacting so well to this last intense phase. 
This is the phase that we have been doing the Mon/Wed/Fri appts so he can get the Erwinia, which is the alternate drug for the PEG that he reacted to. It is not as much as we originally thought.  He had 2 weeks of the Mon/Wed/Fri and so is accessed that whole time (has the port access needle and cord on at home), then he had about a full 2 weeks off from treatments.  After that 2 week break, last week was our last 'planned' overnight stay in the hospital treatment!!  He did have a lumbar puncture with sedation last Friday and will again this Friday which will be his 3rd so far this phase which is a lot of sedation for his poor little body, but he seems to handle sedation well.
Last week and this week he stays accessed for a few extra days and we administer chemo at home through his port. 
This phase has been a little hard on his nerves, but only seems to be really affecting his right leg.  He has seen the physical therapist a few times and we have some stretches we do with Ax several times a day and they seem to be helping or at least slowing the neuropathy he has.  This will go away over time and he should fully recover once we are out of the harder drugs for a while.
Axel will have his next round of Erwinia staring on the 19th and then go Mon/Wed/Fri the week of the 22nd and Mon/Wed the following week.  Then, if he makes labs on May 2nd, he gets to start maintenance on May 3rd!!!  That means we have made it through the hardest part and for the next 24months or so, we will only have appts planned for about every 4 weeks unless something would happen and he would get sick and require a hospital stay, or a change to his treatment plan.
This is very exciting for us and it is hard to believe that he has been going through this for over 6 months.  When you are trying so hard to just get through each day, each week, you sort of lose the concept of time for a while.  It will be such a relief to be able to slow down and let him be a normal 2 year old again (almost 3).  
Axel was able to attend State-A-Thon last Saturday with the whole family.  We were part of the AXiD team and so Pattie and Jimmie were both there to dance for Axel 😍!  He had a great time and did awesome making it about 4hours.  We were very surprised considering he had just gotten discharged from the hospital at about noon that same day. 
He is sporting a new hairstyle as this round has been a little harder on the hair loss than the others.  Mom wasn't quite ready to take that step, but Dad thought it was time and got out the clippers. We are slowly getting used to it, as are the kids at daycare 😊.  It seems to have made his sweet little smile shine through even brighter.
Fingers crossed we make it through April with no surprises and make labs on May 2nd..... maintenance can't come soon enough.....
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