End of April Update

by Chad Keck on April 30, 2012 · 0 comments

Noah having fun on Easter

Noah’s chemo treatments the past few weeks have gone relatively smooth so we are very happy about that. Some days it has a bigger impact on him than others but overall his reaction has been minimal. He is also still holding on to a good portion of his hair which is very surprising to everyone. It’s thinned out of course but still there. Unfortunately his super long eyelashes did fall out though. Aside from that his blood counts have been low and he has needed quite a few shots of Neupogen to boost his white blood cell counts but this past week his body started to recover on this own. This is good news because this drug can apparently cause quite a bit of pain in a persons bones (ouch). He has also had two spinal taps this month and both went well which is good news.

Now, if it’s not one thing it’s another though. While his chemotherapy treatments went fairly smooth he did have to take some very high dose steroids earlier this month and again this past week (Dexamethasone). These are the drugs we really don’t like as the side effects can be quite severe, but it’s necessary. Today was his last dose which is good and we hope he gets back to his normal self soon. The dose he is on can cause things like personality changes, severe irritability and even mania. He has also been shaking quite heavily some days which is hard to watch but his doctor as assured it expected on his dose.

What’s next?

Noah looking good in his boots

Well, we didn’t know this was coming but Noah is going back to the hospital May 7th and again the following week for two more treatments of high-dose Methotrexate. Due to the dose and the length of time it takes (24 hours) they have to keep him under close observation and there is a special recovery drug he receives post-treatment. If you go back a few posts you can read about what happened the last time we went through this (severe mouth ulcers and mucositis). We are hoping things go much more smoothly this time. I’ll post regular updates the next few weeks as he gets though this.

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Treatment Progressing

by Chad Keck on April 3, 2012 · 2 comments

It has been a few weeks since the last update and Noah’s surgery but things are going well so not to worry. He was able to get in a rest week after his portacath was replaced and then promptly started chemotherapy again. He was actually on a 5 day regiment instead of 3 like we had thought but it went by without issue. The days are long during these treatments as he has to stay on a bed in the clinic the majority of the time (~9AM-6PM) but at least he gets to come home afterwards and not be stuck in the hospital.

For the past two weeks Noah has been recovering from this treatment before he can start the next round. The plan was for him to do more chemo this week but his blood counts were going in the wrong direction so last Friday he received a blood transfusion and then had we had to give him injections of neupogen over the weekend. He went in yesterday for blood work and things are looking much better so he will start back up next week. He will also be receiving steroids for the first time since being in the hospital but at least it’s only for a few days this time. Hopefully he doesn’t transform into a little buddha lookalike again 🙂

Not too excited hearing about more steroids...

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Fun At The Clinic

by Chad Keck on March 30, 2012 · 2 comments

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Surgery #2 (Portacath Replacement)

by Chad Keck on March 13, 2012 · 0 comments

In good spirits before surgery

Noah had  to have surgery again yesterday morning to replace his broken portacath. Right now he is recovering from that and will get a few days to rest before some strong chemo starts again next Monday (3 days per week). The doctors still don’t know why the top membrane in the old portacath clogged up like it did (supposed to be rare) but the surgery went well and the surgeon was able to move it over slightly to get some fresh skin over the access site. This will let his other skin that has been poked constantly for the past 2 months heal up a bit.

Chest x-ray showing the portacath and catheter to the heart

Since Noah’s been home this past week his mucositis has also gotten a lot better. It’s still around but no where near how bad it was in the hospital. We are hoping this won’t be an issue going forward since there aren’t such large continuous doses of chemo planned (we hope). There are however different types of chemo some of which have their own bad side effects. Time will tell but he has been very resilient through some of the worst of it so far! All the thoughts, well wishes and prayers help — thank you.

Noah in recovery getting a bit of sleep

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Noah’s New Toys

by Chad Keck on March 6, 2012 · 0 comments

While I was in Portland a few weeks ago I had picked Noah up a new toy that I found at Powell’s books (the red blood cell). Turns out the company GIANTmicrobes makes a ton of different toys so I picked up a few others for him. He loves them and they were a huge hit with the hospital staff.

From left (clockwise): CDIFF infection, white blood cell, stem cell, red blood cell, platelet

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Still In The Hospital

by Chad Keck on February 29, 2012 · 1 comment

Not feeling too good the other day...

As I mentioned in the last update Noah had one more hospital visit to go before starting his regular 3 day a week chemo treatments. Unfortunately this visit has not gone as smooth as the other week.

Noah was admitted to the hospital on Monday (2/20) for the second 24 hour dose of methotrexate. During this time he still was not wanting to eat or drink like several days prior and we assumed it was due to nausea from the chemo since he was still throwing up often. As the week progressed we started to notice what was really going on, a combination of different things:

  • Noah somehow picked up CDIFF which is an intestinal infection. This has no doubt caused some pain and discomfort in his stomach/intestines. They’ve been treating him with some strong antibiotics after he didn’t improve on his own and he cannot leave until this has subsided.
  • Mucositis: This has been the real big problem and it has been making Noah miserable. Just a few days ago his mouth started to break out in extremely bad ulcers and lacerations and this is just what we can see. There are undoubtly some down in this throat which I know from first hand experience can be incredibly painful. In addition this causes a heavy mucus buildup in this throat which can make it hard to breath and cause significant gagging which in turn causes him to throw up. They will also not release him until this is better (a waiting game).
  • Portacath problems: The nurses/doctors have been having on-going problems with Noah’s ‘port’ since he was first in the hospital and now the top access port is essentially clogged (the piece under his skin). They’ve been working on it for days with no luck. This means he can only be hooked up to one line/drip at a time which is ok most of the time but if he ever gets really sick or another infection they have to be able to use both for antibiotics, etc. So once his counts recover it’s looking like he will have to go into surgery again to have a new portacath placed and this one removed. Not to happy about this but we don’t have any other options at the moment.

    Having fun playing in Grandpa's boots

So it’s been almost two weeks instead of one but it’s far better (and safer of course) to have him in the hospital while he waits this out. His doctor put him on some strong pain medicie the other day for the mouth sores which has made a huge difference. You could easily see that he was in a lot of pain and major discomfort but he is feeling a lot better. We just want them to go away and the infection to clear up so he can come home soon.

Thank you to everyone who has continued to express their concerns and thoughts/prayers. If he gets better in the next few days we may get to go home this weekend. Will update when that happens.

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24 Hours of Chemo

by Chad Keck on February 18, 2012 · 0 comments

This was a giant bag...that is a lot of chemo 🙁

Noah just came home Thursday after being admitted this past Monday for a 24 hour dose of methotrexate. This is an extremely heavy continuous dose so they had to monitor him very closely and once this was done they treated him with Leucovorin as an antidote essentially.

As you can imagine he has not fared as well this time around and has been extremely sick since being home. We hope he gets better soon but unfortunately he goes back this Monday for another round of the same. He hasn’t been eating/drinking much for days and gets very lethargic at times.

That said, his numbers continue to look good so we just need to help him get through this. Will be providing an update after this next week.

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Noah’s First Valentine

by Chad Keck on February 15, 2012 · 0 comments

Valentine Card

Today Noah got a very nice surprise — his very first Valentine! It was from Jane, one of his friends at school 🙂

It certainly put a smile on his face.

He really liked it!

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Back To The Hospital (scheduled treatment)

by Chad Keck on February 13, 2012 · 6 comments

Noah coming after the camera!

Noah has been out of the hospital now for a little over 2 weeks and he has certainly been enjoying the freedom. We’ve been staying with my parents as the work gets finished up at home which is now just about done, finally!

As for Noah’s condition we have some good news to share. He has been seeing his doctor 3 days a week (M/W/F) and at first his blood counts were going down so he was scheduled to get more blood but by this past week his body seemed to get on track and his numbers improved a bit so this was not necessary. He also had his first bone marrow biopsy last Wednesday so they could get an exact count on his blasts. These counts are down over 90% already (1.5 to 0.1) just after induction therapy which is doctor is extremely happy about. So essentially everything is on track, the initial treatment was very effective and his body is also bouncing back quite well.

That said, Noah was just admitted back into the hospital today for a short 1-2 week stint before his consolidation therapy begins. His doctor told us this will be the harshest chemo he will get thoughout his entire therapy including being worse than the initial treatment. They have to give him some specific meds to protect his organs and keep a very close eye on things due to the dosage and frequency. He handeled the first round of treatment quite well so we are hoping he can get through this without too much trouble. I’m not sure yet if he will get steroids again but we certainly hope not.

Just another day at the doctors office...

I will provide an update on his condition later this week along with any other information we may get. As I’ve said, things are going relatively well considering the circumstances but he is no where near out of the woods so we would really appreciate your continued prayers and thoughts.

Special Note: Thank you to everyone who has donated blood or made a monetary donation. We’ve raised just over $2,000 which will go a long way towards getting some of the special items Noah will need once he comes home in the next few weeks.

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Noah’s New Toy

by Chad Keck on February 12, 2012 · 0 comments

I saw this at Powell’s Books today here in Portland and thought it was the perfect toy for Noah (fitting anyways). Can’t wait to give it to him 🙂

It's a red blood cell...what should we name it?

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