Latest Update 17 Dec 09

Joshua had a clean MRI last week-- disease free both brain and spine. We had to do the spine because of the newly dx scoliosis.

He's been on growth hormones for about 20 months. Growing aboout 10 cm in that time. He's close to his final projected height of 5 foot 7 inches. He's on a thyroid medication as well because of radiation damage to his thyroid.

Scoliosis has shown up in his spine the past month-- perhaps due to a growth spurt the last few months. We'll visit with an orthopedic doc and see what we should do there....

Joshua's an A/B student in about the 9th-10th grade. He's finishing up geometry and in the middle of biology. He's earning his 2nd degree black belt in Taekwondo in a month or so. And he's an excellent cook!!!

Latest Update 23 June 06

We just returned from a visit to Joshua's oncologist and got the results of his latest tests. The good news is Joshua is still tumor free! His spinal MRI looks great and the doctor said he won't have to have spinal MRIs anymore (just brain). Joshua was pleased as an MRI of the brain is much quicker than the full cranio-spinal MRI he had last Monday! Other tests looked good as well.

It was of interest that the high aortic arch that has been observed on past echocardiograms was not noted on the write-up this time-- perhaps he's grown into it (or maybe it was just not mentioned)?

Dr. Carcamo is very please with how Joshua is doing and so are we. His next MRI and appt with Dr. Carcamo will be in 6 months. We'll also have another audiogram around then as well because the last one showed continuing hearing loss. Also, we will probably be seeing Joshua's pediatric endo at Phoenix Children's later this summer.

Latest Update 5 Aug 05

It's been quite a while since we've sent an update out on Joshua, and so I thought I'd send a quick update out on Joshua's current status.

Joshua had another full cranio-spinal MRI earlier this summer. It looked very good-- no tumor! (Yay!) Also, as some of you may know, Lori is expecting in late August/September. Joshua's oncologist recommended us for the designated donor program at the Cord Blood Registry (CBR) again and we were accepted! That means we get to store our new baby's cord blood free for five years at CBR for Joshua's use in case the cancer comes back.

We've switched pediatric-endocrinologists. We have to travel further now (we had been going to El Paso)-- our new endo doctor is in Phoenix, AZ, but he is excellent so it is definitely worth the trip. Also, the staff at Phoenix Childrens (where he practices) is on the ball (very nice compared to the difficulties endo clinic). Our last appointment with him was in July. Joshua is continuing to grow (a big concern due to the radiation treatments), but he's in the 25th percentile for height (for boys his age) instead of the 50th percentile (where he was prior to his tumor diagnosis). At this point we're just watching his growth. It falls off, Joshua will probably need daily growth hormone injections. Good news-- Joshua's new endo doctor recommended we try going off the thyroid medication earlier this year. Joshua has done fine without it since March. Joshua's cholesterol was a bit high when labs were drawn in July. We'll see his doctor in a couple months and see if it's changed any.

Joshua's overhealth is continuing to improve. I am amazed at how good his balance has gotten. Also, about a year ago Joshua started having regular headaches. His oncologist tried a lot of things but was never able to resolve the issue. However, a while after he got off the thyroid medicine, his headaches disappeared! I'm not sure if it was just coincidental with the timing, but regardless we are very thankful that his headaches have subsided.

Thank you all for your prayers and support for all this time,

Daryl

PS-- not sure if everyone heard, but we took Joshua to a Pediatric Brain Tumor Long Term Survivors Clinic at Dallas Children's Hospitol last November... we were very pleased and got some good recomendations there

18 Nov 04

Just a quick update! Joshua had an MRI on Monday. We got the results tonight when we saw his pedi-oncologist. Good news-- no recurrent tumor! Yeah! In the big picture Joshua is doing pretty well, but he's had a few "minor" health issues lately... about a week ago he was running through the house and stepped on a sewing needle that had gotten dropped into the carpet. Ouch! It required a doctor to cut his foot open to get it out and stitch it up (on Joshua's birtday no less :-( ). Then a few days later he was washing dishes and dropped a cup that shattered and made about a 1/2 centimeter gouge in his leg. On top of that he's got a cold!

Next week we're taking Joshua to Dallas to Children's Medical Center for an appointment with Dr. Daniel Bowers. Dr. Bowers runs a pediatric brain tumor long term survivors clinic that may be very helpful for Joshua. We'll let you all know how that turns out.

Thanks for all your prayers and support for all this time,

Daryl

Update 14 May 04

Joshua saw his pedi-oncologist last night and has also undergone a number of tests in the past week (and others recently). The most critical test, a full cranio-spinal MRI (takes hours!) was done on Monday. The good news is there is there is "no evidence of recurrent tumor" in his brain and his spine is also clean!

Joshua has a little more hearing loss. Also his aortic arch is still large. It is not an aneurysm, just larger than normal for his age. Joshua is also on levothyroxine for his thyroid to for growth. He has gained a fair amount of weight but only a little height. Joshua still has problems with balance and left side weakness, but both have improved greatly. In fact, Joshua has been participating in TaeKwonDo (along with others in the family) and has even competed in a tournament a few weeks ago. He even had the spunk to compete in sparring there (a sport that's pretty tough for someone with balance problems)!

I am amazed that Joshua is at the one year post-treatment point. This is a very special anniversary for us. We give praise to our Lord the Healer and great thanks to all the skilled, compassionate and wise people that He has placed in Joshua's and our lives.

Joshua doesn't have to have another MRI for six months since things are going well. However, he will still see his pedi-oncologist in about three months and he will order an MRI, etc if anything seems suspicious.

Thanks to all of you for your prayers and support,

Daryl Cleveland

Update 19 Feb 04

Hi All,

We just got back from Joshua's appointment with his pediatric oncologist. Good news first-- his MRI of the brain from this past Monday looked very good: "No evidence of recurrent tumor"! We breathed a collective sigh of relief and are very thankful.

Overall Joshua is doing so much better than he was not so long ago, but there are some issues, particularly side-effects from the cranio-spinal radiation and to some extent from the chemotherapy (hearing related). We'll be seeing his pediatric-endocrinologist again in April and will hopefully know more then.

Joshua will have another MRI on May 17th. This one will be of both his brain and spine. He'll also have some other tests like an echo cardiogram, pulminary function, and hearing as well.

Thank you for all your prayers and support,

Daryl

Update 14 Nov 03

Hi All,

I know many of you have been concerned about Joshua and have been praying for him. He had an MRI of his brain earlier this week for which we got the results last night. The results were very good! At present, there is no evidence of recurrent tumor! We are so relieved.

Also, he recently had a bone age that dated his bone age at 8 years (he's 10). This is actually good, as it probably gives him more time to grow (the concern here is that the high dose radiation to brain and spine could cause a variety of growth problems that among other things result in reduced stature).

He also had an audiogram this week. His hearing is stable with loss mostly in the 6000-8000 hz range from the cisplatin last fall.

We're rejoicing and trying to unwind. We don't go back to the pediatric oncology clinic for three months now (same time as the next MRI).

Daryl and Lori

Update 28 Aug 03

Joshua is out of surgery (for removal of his port-a-cath) and doing well. All went smoothly according to the surgeon (Joshua's disposition indicates the same-- he asked if we could stop by Chuck E Cheese Pizza afterwards-- ofcourse we obliged!).

Daryl

Update 10 Aug 03

Hi,

We've received the results of the tests that were run on Joshua last Monday. First and foremost, Joshua's MRI came back clean ("No residual or recurrent neoplasm suggested" is the formal reading)! There are some post surgical and radiation induced issues but no tumor is fantastic!

Joshua's pulmonary function test was normal-- which is a positive change from the previous test. Also, his blood work looked quite good. His white cells are still suppressed which is typical for his situation, but other things like magnesium are normal (a good sign and fairly atypical considering the treatment he was on).

Because his MRI (primarily) was so good, Joshua's doctor told us that we can have the surgeon remove his port-a-cath. Joshua is pleased!

Joshua will be seeing a pediatric neurologist on the 18th and a pediatric endocrinologist as soon as he can get in (I've been told 2-3 months for an appt is normal).

Since Joshua has been doing better, we've been able to take mini-weekend trips. This weekend we went to see Lori's sister and brother-in-law in Phoenix. Despite the 112+ temperatures, we were quite refreshed in Phoenix!

Thank you for praying, thinking and caring so much for Joshua and the rest of us!

Daryl

Update 12 May 03

Hi All,

We have received the results of Joshua's tests. First things first-- his MRI was clean! For the most part, other tests looked pretty good as well. His heart is very strong. His hemoglobin is slowly rising. His immune system is getting stronger. He lost some more hearing in the 4000 hertz range but regained some hearing in the 8000 hertz range (both are high frequency ranges). His pulminary test showed a bit of an issue, but better than the last couple of times he was tested.

Joshua's oncologist will see him again in 3 weeks and then if things go as planned Joshua will only see him once a month. Pretty amazing as it's been over a year since Joshua hasn't been poked for blood and checked out by a doctor and nurses at least weekly!

We had car trouble today just as we left Joshua's audiology appointment-- we lost the power steering and power brakes. The Lord went before us and things went smoothly and we were steered to some very nice, helpful people-- our vehicle is in the shop but they got us a nice rental, that seats our whole family comfortably, to use until ours is fixed. Hopefully our Suburban will be out of the shop before long.

Thank you all so much for your prayers, concerns and everything-- it is all extremely helpful,

Daryl

Update 02 May 03

Hi All,

Joshua will be getting a variety of tests on Monday, May 5th. These tests, including MRIs of his brain and spinal column, are part of his end of protocol evaluation. (Other tests include pulminary, echo cardiogram, and a lot of bloodwork plus a audiogram the following week). We have a few prayer requests surrounding theses tests. Please pray:

1. That both the brain & spine MRIs are clean (the tumor Joshua has been battling is very aggressive and fast growing so even though the MRI in early February was good, things could have changed)
2. For good results on all tests (chemo/radiation may have caused damage)
3. That our family has peace-- MRI time brings all sorts of thoughts and feelings and so we will need the peace of God
4. That Joshua is comfortable during all of these tests and doesn't get too worn out

Thanks,

Daryl

PS-- Congratulations to Amanda and Justin Parrent on the birth of their new daughter at 5pm this evening (2 May) and also to Kurt the big brother!

Update 25 April 03

Joshua was released for the hospital last night and we're back home! Joshua's doctor was surprised yesterday at how well Joshua had rebounded-- especially his ANC. He had told us on Tuesday that Joshua would probably be in the hospital for 4 or 5 days so this early release was very good news! Joshua's hemoglobin really took a major dive Wednesday morning (drop from 10.2 to 6.6) which concerned all of us, but it had risen every so slightly on Thursday (6.7) so at this point we're just going to wait and see (and likely continue with epotin injections which resumed last Monday when first his hemoglobin went down).

In my original message I mentioned a concern for the wing of the hospital we were placed in (due to no room in pediatric oncology)... well it turns out things have changed and it is much better including allowing Joshua's siblings in with no problems what-so-ever. This was a big help especially for Joshua. Here's a snippet from an e-mail Lori had sent about it: "They let the kids all be here just like during chemo treatments. Joshua still gets to be big brother and requested Judah and Zach wash their faces after eating powdered donuts. He tells the girls they can watch tv and requests Zach to stay longer."

Joshua is tired but feeling better.

Thanks for the prayers and notes of encouragement,

Daryl

Update 22 April 03

Early this morning Joshuas spiked a pretty high fever and his doctor has admitted him to the hospital. Right now he is on a broad spectrum anti-biotic and they have cultured both his ports.

Last night his ANC (measure of immune system) was extremely low at 14 (typical for healthy folks is 3000-5000 and for Joshua about 700 to 1500 so this was way, way low). Also his hemoglobin dropped significantly since last week down to 7.1. With his ANC so low there is a danger that an infection could be very serious and that could be evidence by his fever. On the other hand, when a person's ANC drops so low they can get what is called a neutropenic fever which does not necessarily have a direct illness induced cause (it is not clear at this point which is the case here although Joshua has had symtoms of illness). Additionally he temperature has dropped significantly.

This trip is to the hospital is a little stressful due ofcourse to the danger, but also because the pediatric oncology wing of the hospital is filled up so he has been placed in with the general pediatric population which caries it's own risks for infection and also tends not to be quite as family friendly as the pediatric oncology wing. That said, the nurse who will care for him until 3pm today has oncology experience which is a comfort.

Please pray that Joshua is protected and healed first and foremost but also that his stay in the hospital is short and that he is able to interact with his siblings.

Thanks,

Daryl

Update(2003-04-17):

We're back home from Joshua's final chemo treatment! The treatment went pretty well. Joshua had a bit of sickness, vomiting and occasional double vision but he was in much better shape than at the treatment three weeks ago. This last treatment will affect him like the previous cytoxan treatments including neutropenia (little to no immune system) so we will still need to be careful about sick contact for some time.

We are very thankful to be at this point. We've already been celebrating as we stopped on the way back from El Paso at 9:00pm last night for desert. Actually desert had been the plan, but Joshua ordered pancakes, sausage and eggs! The food at the hospital is actually pretty good but after eating it for the last 15 months, it gets old. Our celebration will continue over the next few days as we have a couple special things planned for Joshua.

So what's next? Well, Joshua is at the tail end of a very important and hard portion of his journey, but there is much ahead of him. Of course he'll be watched for tumor recurrence, but a lot from here out will be dealing with the long term effects from the radiation and chemo (as well as the effects of the brain surgery). The road will have difficulties, but it is a road we are very happy to be walking with Joshua.

We've been asked when/if Joshua will be considered "cured". There aren't really a lot of hard and fast rules for medulloblastoma, but it does appear to largely follow Colin's Law which is age at diagnosis plus 9 months. For Joshua that will be when he's about 17. Also, the 3 year mark and 5 year mark are very significant milestones as a lot of recurrence occurs within 3 years and most within 5.

Thanks for your prayers and support-- it's all been needed and still is!

Daryl

Update(2003-04-14):

Joshua was admitted to Providence Memorial Hospital in El Paso this morning. He is scheduled to receive iv cytoxan over the next two days. If all goes well he will be released Wednesday or Thursday.

This treatment will close out the chemotherapy portion of Joshua's treatment protocol. We are all looking forward to the end of this treatment. Please pray for him that this treatment goes very well and that he has a good time during this last in-patient treatment. I pray that the cancer is gone, not to return again. Regardless, I am thankful for all of the time we gotten to spend with him-- 14.5 months ago we didn't know whether he'd be here at all!

Joshua's counts (for those keeping track) were quite good-- ANC around 1350, Platelets about 305 and hemoglobin 9.4. His hemoglobin has dropped quite a bit, but since this is his last chemotherapy treatment we are not as concerned and hope it will recover on its own rather than begin eopotin injections again. The ANC being so good (for Josh) is a praise-- the last several cytoxan treatments have had to be delayed because his ANC was so low (<600)!

Joshua's doctor has decided to alter the dose of cytoxan back up to full strength for this final part of the final round. Joshua's dose had been reduced because of the level of toxicity that he experienced. (Those of you that have seen Joshua recently may have noticed that his hair had started to grow back-- that was probably due to the reduced dose cytoxan so he may lose it all again with a full dose).

Thanks for all the prayers and kindness,

Daryl

Update(2003-03-25):

Just wanted to give everyone a quick update. We had actually hoped that Joshua would have been discharged and back home by now, but we're still at the hospital instead. This session has turned out to be pretty rough on Joshua. He got quite sick and spiked a fever last night and has had other unpleasant symtoms throughout the day today (Tuesday). He's sleeping right now which is good as he was up for quite a bit of last night.

At this point I'm not sure when he'll be released-- possibly tomorrow if he doesn't have any more troubles but it could easily by another 24 to 48 hours or so (especially if his temperature goes back up).

As always Joshua has really hung in there well through everything.

Lori's parents have been a real blessing. Zach and Judah are both under the weather so Marv and Bev really helped by staying with the kids at the Ronald McDonald House almost the entire time (we don't want to expose other folks to germs unnecessarily).

Your thoughts and prayers are very much appreciated,

Daryl

Update(2003-03-24):

Joshua was admitted to Providence Memorial Hospital in El Paso this morning. He is starting his 8th two cycle round. Today's chemo will be vincristine and cisplatin. Things have gone pretty quickly today. He has already received several of the pre-meds and will get the first chemo (vincristine) shortly.

Joshua said his tummy was not feeling so well a bit earlier so please pray that he handles all of the medications well and that nausea is non-existent. Cisplatin is the chemo that can (and has) damage his hearing. We're praying that his hearing does not degrade further and that in fact his hearing recovers. A positive note on this front is that while Joshua has not recovered in any hearing loss, his hearing has been stable for the last few times it has been checked.

As always we're praying that Joshua has a good time in the hospital. Also as the end of chemo treatments is finally in sight we are praying especially hard that he is cured and that the tumor will not return.

Also you may have noticed that my e-mail address has changed. My primary mail address is now daryl@fastwave.biz. However, e-mail to daryl@zianet.com will still get to me and will probably continue to get to me for at least several more months (if not indefinitely).

Thanks for everything that all of you do!

Daryl

PS-- for folks that are watching his counts Joshua's ANC was excellent (~3000) and his hemoglobin was so good that the doctor has decided to withhold his epotin today (so week in a row!). That's really good because the epotin is probably the most painful injection he gets.

Update(2003-02-04):

We received the word on Joshua's tests-- they came back good-- MRI, echocardiogram, EKG, and kidney test. He's eating up a strom after last night's chemo. Daryl's made 2 trips to Mc Donald's this afternoon. We haven't seen the doctor today, so we don't know about being released tonight.
Thanks for your prayers!

Update(2003-01-28):

Joshua's blood work looked pretty good yesterday (Monday). It appears that the neupogen finally kicked in... his White blood count was 21,670, his ANC was 21,019 and his hemoglobin was 9.9. His platelets are about 71,000 which is still low but almost double what they were last Thursday. We stopped the neupogen yesterday so Joshua's WBC and ANC will undoubtably fall considerably but hopefully it will come to rest at a good number (say between 1000 and 2000).

Joshua has another MRI planned for February 3rd. Assuming all is fine on the MRI, Joshua will have 4 more in-patient chemo treatments (every 3 weeks) and several outpatient treatments. At this point, the chemo treatments should end sometime during the first week of April.

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• The Beginning: 23 January 2002 through 27 February 2002
  
• 29 April 2002 through 12 September 2002
  
• 08 October 2002 through 21 January 2003