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  Family Log (July 2004 - Sept. 2004)...

 


Entries are listed NEWER to OLDER, meaning newer entries are on top, older at the bottom. Depending on when you read the site last, you may want to scroll down, find the entry you read last and read UP for a more chronologically accurate update.



September 2004

A Taste of Normal Life
We had a tremendous September. Ryan seemed almost indistinguishable from a healthy child. Given the turn of recent events, it's easy to lose sight of September, but we can’t do that.

September brought Ryan’s first hair cut since it grew back, a trip to the Zoo, a few play dates, an adventure to Kings Dominion, outings to Burke Lake Park, and planning for life after treatment. I even had an opportunity to think of others afflicted with cancer and undertook an effort to raise money for the Leukemia & Lymphoma Society’s fundraiser Light the Night. I wouldn’t trade September for the world.

Light the Night
A smashing success. My goal started at $1,000.00. I quickly changed it to $2,500.00 in response to the generous donations I received within days. I think they are still allowing donations to be collected until the end of the month - for those of you who did not have a chance to do so earlier but would like to. And even if you are contributing to Ryan's cause in other fabulous ways, you can see a recent picture of Ry on my webpage for the event at www.active.com/donate/ltnAlexan/ryanholtsmom. By the way, I raised well over $3,000.00!!!!

It was really cool to see the hundreds - if not thousands - of people there with a common goal to beat the blood cancers. Lighted balloons dotted the night sky representing those affected by this disease and all of us coming together to defeat it.

Medical Information
For those of you who are interested in the medical aspect and to keep my journal accurate, this section will discuss...

Ryan’s health and the medical details in September:

Overall, pretty uneventful. On September 1, he had his weekly Velban push in his IV. Cycle 13 was started on September 8 and went off without a hitch. In fact, he was tolerating the Velban enough to bump up the dosage closer to the originally intended amount. The remaining 2 weeks of Cycle 13 were uneventful other than strange complaints related to his heart. While doing a non-physical activity (like watching t.v., sitting at the table playing with his guys), Ryan would announce that his heart wanted him to run or that his heart punched him. After quite a few complaints of this nature, he was referred to a child cardiologist for testing. Thankfully, all tests shows his heart was functioning within normal ranges.

And then came September 29, 2004 - scheduled for the start of Cycle 14. Ryan’s counts were at 345 and thus chemo was not possible. It was the following day that began this new journey leading us down this more difficult - but hopeful - path.

August 2004...

Highlights:

Blissfully uneventful month: Relatively low key - just the way we like it.

Treatment: One more cycle down and only three to go!

Light the Night: This is the fundraising event sponsored by The Leukemia & Lymphoma Society scheduled for October 2, 2004. I am failing miserably in my duties as a walker and am hoping to motivate some of you who may be interested in helping me out. Please visit my webpage for the event: http://www.active.com/donate/ltnAlexan/ryanholtsmom

The Details:

August 1 - August 8, 2004:

The party continues. Although Ryan’s birthday passed and a celebration was had (albeit in the hospital), the partying didn’t stop there. It was basically a week long party. Ben joined us on our last day in the hospital to celebrate. Neither Ben nor Ryan took any notice that the surrounding was not the typical party place.

Jeremiah - Ryan’s good buddy since he was 10 weeks old - brought the party to our house. We pulled out the borrowed moon bounce and the two of them bounced as high as the clouds.

Ryan continued the 2 antibiotics, Zithromax and Omnicef (home med for cifipime). His counts had rebounded tremendously to 3800 so he was able to get the Velban on the 3rd - although reduced by 20% the normal strength to respond to low counts which prevented any administration of chemo. They would rather get a reduced amount in than none. Ryan’s IGG (immuno gamma globulins - a/k/a antibodies) were low so he got an infusion of IVIGG (intravenous IGG).

In the meantime, the birthday celebrating continued. Amy, Daniel and Dave pulled off an amazing feat and found via the internet a slew of Pokemon and Digimon guys that Ryan did not have. That evening his eyes shut under the weight of his lids with one last thought, "life is good because I have Chicoreta."

And Ryan had what resembled a real birthday party when Barb and Mark had us over to celebrate with their 2 girls, Ellie & Gabby, and Michelle and Brian’s girl, Maddie. Three cute girls, Ry and a hot pool - something he may only be dreaming about in 15 years.

August 9 to August 15, 2004:

We were ready to start Cycle 12 on August 11th but unfortunately Ry’s counts were only 400. The Cycle had to wait until the following week. In order to ensure starting the following week, Ryan went back on neupogen shots for 5 days.

August 16 to August 22, 2004:

Superman effect. Ryan looked and felt fantastic as last week progressed due to the neupogen - giving him what I refer to as the Superman effect. His white blood cell count jumps dramatically and he can take on the world.

Baja Fresh - On Monday, August, 16, 2004, Rick and Angie hosted a fundraiser at Baja Fresh in Chantilly for our team "Ryan’s Hope" in the Light the Night walk sponsored by The Leukemia & Lymphoma Society. People who participated presented a coupon when they ordered their dinner and a percentage of proceeds were donated by Baja Fresh. The fundraiser netted an amazing $528.00. That’s a lot of Baja Fresh.

Cycle 12 of 15 - Ryan’s counts were 41,300 when we went to the office on August 17, 2004. Yes, that’s Forty-One thousand!!!! This is the neopogen high - which is artificially high and after shots are ended usually drops by two-thirds. But even subtracting the estimated amount, his counts were tremendous and the cycle began. He got the usual Kytril, Solu-medrol, Methatrexate and Velban in the office - although the Velban was cut an additional 20% as a result of the low counts the previous week. We also began the 5 days of 6 MP and pedia-pred (steroid - a whopping 75 ml a day). Ryan did phenomenally well with all the meds. He never ceases to amaze me. We kept things mellow as far as plans to avoid putting Ryan in a difficult position when having to take all the Hulk drugs.

August 23 to August 31, 2004:

At his visit to the doctor’s office on August 25th, Ryan’s counts were 1100 - very decent - we’ll take it. He got Velban and pentamidine as scheduled.

Cabin fever occasionally sets in. I feel so tortured at times because I want Ryan to enjoy this time - especially when he is feeling well, but we’re so close to the finish line and I don’t want to take unnecessary risks. As a result, his summer fun is usually limited to playing with us. Even worse, I’m not always in the mood. And if I fail to entertain or educate him during a day, the guilt that follows is suffocating. But if these are our problems . . . I remember when he could barely place one foot in front of the other due to a side effect of Vincristine or when his mouth sores courtesy of Adriamycin caused him to go on a hunger strike. It’s all relative.

Unashamed plug:

I can finally focus on trying to do something productive to fight lymphoma. I have committed to be a walker in the Light the Night event. Rick and Angie got the ball rolling. They decided to form a team in honor of Ryan. Our team is called Ryan’s Hope. The event starts with walkers raising money for education and research to beat blood cancers and it culminates on October 2 by the participants lighting the skies in honor of those who have been burdened with the disease. One of the golden rules of the event is to start raising money early to give people plenty of time to donate - I have failed miserably in this regard. But I do not think it is too late.

Sometimes I am amazed at how far treatment has come and the increase in survival rates, but more often I am dumbfounded by how little progress has been made. When I talk to Wendy and Joe (both cancer survivors of about 20 years ago), I am amazed that their treatments mirror Ryan’s of today. The same drugs - similar regimens. Cancer is managed by blasting very dangerous and potent drugs into the body. It kills everything - good and bad. The side effects are severe and life-threatening in and of themselves. The hope is that the good will rejuvenate and the bad will be gone for good. The body takes some serious punishment in the meantime which will have life long effects. We were told on the day that Ryan was diagnosed on November 7, 2003, that he was getting a drug called Adriamycin (one that has been used for many, many years). In its introduction, Dr. Weil said, "This is the drug we hate to tell parents we will be using." Not the thing a mom and a dad of a 3 year old want to hear on the heels of hearing he has cancer. Adriamycin is damaging to the heart. At its best, Ryan is precluded from lifting weights for the rest of his life. Additionally, Ryan will have a greater risk of getting a secondary cancer over the course of his life.

The treatment has to improve. Every day another kid is diagnosed. Another parent is sick with fear. I see the hollow looks in parents eyes in the hallways of the hospital and know their world has been rocked. It needs to stop. Your $10.00 or $100.00 is a small amount, but don’t think it’s not enough to make a difference. Consider yours along with the immediate people around you - in your own office, I bet there are 10 people willing to contribute 10 bucks or more. Just in that teeny tiny small corner of the world, there’s $100 plus. And if your company is looking for a philanthropic cause, let them know you know of a worthy cause. The donations are tax deductible. The donations can be made on my webpage or anyone’s page who is participating in the event. There is no fee associated with donating on-line. Ryan and those who have a blood cancer now as well as those that will get cancer in the future - are worth it. Please do it - contribute something - however small (or big) - and mention it to your co-workers, friends and family. My webpage can be found at http://www.active.com/donate/ltnAlexan/ryanholtsmom.

Ryan only has THREE more cycles - and a lifetime to live.

Warmest regards,

Lori

July 2004 Update...

Highlights:

Deja Vu: End of the month fever and a cough send Ryan to the hospital - only this month he arrived there on his birthday. Surprisingly (or maybe not), Ryan seemed to really enjoy his birthday.

Pulmonary infection: At first believed to be pneumonia, the x-ray of July 31 showed something in the lungs but potentially only a viral infection like bronchitis. A downgrade of sorts. His neutropenic status kept us in the hospital for the weekend.

The port: A/K/A swimmie tubie. The jury is still out.

Cycle 11 / 15: Ryan’s only full chemo cycle of July began on July 21. Fairly uneventful but for the steroids - the problem child of the meds.

CT Scan: The CT scan of Ryan’s neck, chest and abdomen were clean!!

Ryan’s Hope: Light the Night Walk benefitting the Leukemia & Lymphoma Society. The Fontanillas designed an awesome flyer (w/ picture of Ry) to give you all the details - visit THIS LINK.


Dates to calendar:

October 2, 2004
- Light the Night Walk at the Reston Towne Center

August 16, 2004 - Baja Fresh fundraiser (buy your favorite dishes and 15% of the proceeds are donated to Ryan’s Hope Team for the walk) - visit THIS LINK for the flyer.

Details:

July 1 to July 6, 2004:
The Fourth of July was like any other celebration going on in your neighborhood - lots of food, fireworks by Costco, good friends, and a few mosquitos. Ryan was neutropenic so the festivities were at the Sochas with a small crowd, but were warmly reminiscent of my childhood celebrations with family.

July 6 to July 11, 2004:
No Velban this week as Ryan’s counts dipped to 300 - and the nagging worry creeps in. He did, however get his pentamidine to keep away a particular type of pneumonia - if only there was a drug to keep them all away.

July 12 to July 18, 2004:
The PICC line - I was never crazy about the PICC line and was happy that its days were numbered. Most worrisome was the location of the line and its fragility - a rambunctious 3 year old boy isn’t exactly gentle with his throwing, punching, hitting arm and since it wasn’t sutured in, I was constantly waiting for a disaster. Fortunately, that wasn’t the disaster that came. Unfortunately, there was a disaster. First, a visiting home nurse was required to come here to change the dressing. These nurses are not pediatric specialists and we find ourselves explaining how to do the procedures to them. One of the last dressing changes prior to the removal, the nurse pulled the line out far enough that Ryan had to get an x-ray to make sure she didn’t pull it out of place. Then, on July 12th - 2 days before the scheduled removal - the line popped - I could see the flush (saline and heparin) and some of his blood seep out of a hole in the tubing and soak his arm under the dressing. Bummer - right before it was to be taken out.

The scheduled Velban was postponed until after the new line went in on July 14, 2004.

Port - the new line. July 14, 2004.

For the weeks preceding the surgery, we had discussed the options with Ryan. The "tubie" vs. the "swimmie tubie". I went so far as to make a poster which was divided in half to illustrate the options. A picture of a pool and hot tub was on one side along with a doll with a needle in it. The other half had a picture of a doll with a tubie and pictures of the medical supplies needed for its upkeep. I was hoping Ry would relieve me of my parental obligations and make the decision for us. No such luck. He wasn’t sold on either one, but at least he understood what each meant. Ultimately, the decision came down to the fact that we would not be entering the line a minimum of 4 times a day (which equals opportunities to introduce infection) and that he was going to have to keep it for at least 6 months post treatment.

As I had explained before, the port requires that you pierce the skin with a 90o needle which is attached to a line. When I had looked at the needle at the doctor’s office, it didn’t seem nearly as big as it did the first time it had to be put into Ryan’s chest. Entering the port is called accessing and taking the line out is called de-accessing.

The line stayed accessed after the surgery so we could go back to the doctor’s office and get his Velban. Ryan was sore but did great in the surgery - of course gas and Versed were our good friends for the day (both anesthesia - and Versed has amnesia properties as well).

The rest of the week, Ryan was ginger with his new port but began to get excited about the ability to play in the water. In fact, to date (from July 15 to August 1), he has enjoyed the sprinkler at Papa’s 3 times, the Slip ‘N Slide a few times at home, a few full baths, a rocket sprinkler, a spider man sprinkler and a dip in a "hot pool".

July 19 to July 25, 2004:
Cycle 11 /15 on July 21 - The access was as close to a nightmare as it could be. I doubted myself and had to have Greg explain over and over why we made this decision. As I said, the needle was like 20 times the size of the one I remember seeing beforehand. We left the line accessed since he was going to need it for the CT scan on Friday the 23rd.

Steroids - The bane of our existence. You may recall the hideousness of the steroids from the beginning - Ryan couldn’t keep down any form of the very bitter medicine. And once we found the formula that worked, we had to stop it because the volume was increased so greatly. It was then that we had to convince them to allow us to administer the drug intravenously. It was working beautifully. Without the central line, we faced the problem all over again. Our discussions with the docs before getting the port had been left that we could split the 5 days of steroids by leaving him accessed for a few days and then de-access him and give him the huge volume of the liquid form that he could tolerate. Dr. Horn first had to check to make sure that volume wasn’t toxic. We enacted the plan this cycle.

Of course the intravenous part went smoothly. The liquid was challenging. Ry was soooo good and willingly opened his mouth for SEVENTY FIVE mL each day. His appetite was poor and the medicine is supposed to be taken on with food - not a good combination. He was able to keep most of it down but even when he could, it clearly upset his stomach. Why did we get the port again? Oh yeah - quality of life when we’re not doing a procedure (water play and no maintenance / procedures that were done on a daily basis) and less opportunity to introduce infection.

Since he only has to endure 4 more cycles of 5 days of steroids for each, I caught myself chanting:

Just 4 more times . . . . Just 4 more times . . . .

CT scan on July 23
Not a pretty day. In an effort to help Ryan through the scan, I made things worse - something I occasionally stumble upon. I requested a sedative to help him through the process - I was told he would have to remain still for 45 minutes. At my request, the doc gave him Ativan before the scan in an effort "to take the edge off". Instead, he had a side effect occasionally seen - highs and lows - he went from giggling like a drunken sailor to weeping uncontrollably - up and down and up and down and . . . He was a puddle.

Remarkably, he stayed perfectly still when it came time for the scan. A perfect angel. The joke of it all - it only took a couple minutes and he could have done it without any drugs.

I originally asked if he could get anesthesia. The doc said the best scan can be done if he has contrast put into his line and if he drinks contrast. He could not drink anything with anesthesia so we opted to go for a step less than anesthesia. It was very frustrating because I made it VERY clear at every occasion that he needed oral contrast and I wanted to get it so I could start helping him drink it - The contrast has to process through his body for a period of time before the scan and I didn’t want what little benefit he was having due to the sedative to wear off. I was ignored and after the 3rd or 4th time that I requested the oral contrast, it was too late - they had given him the maximum dosage per 24 hour period through his line.

The good news : the scan was clean and - by luck - Ryan had a natural contrast present in his body that allowed them to have an excellent picture - it was his stool - not the preferred method, but for once - we were happy for the poops in the belly.

Twenty year reunion - My dear friend Chrissy came in from California for our high school reunion. She stayed with me for a few days before the Saturday event. Let me take one second to brag about another friend: the day she arrived we at the doctor’s office for the new cycle - when we got home, she had mowed the lawn and was shopping for groceries to make us dinner. At that very moment, our reunion was already a huge success. We enjoyed ourselves catching up with old friends.

July 26 to July 31, 2004:
Ryan started off the week at a phenomenal high that was the opposite of my prediction - his counts were at 2300. He got his Velban on the 27th. He did fantastic with the access today - not even a mild complaint when the needle went in. I think I got the EMLA (numbing cream) in the right place this time. He started to develop a cough but was fairly mild in the first half of the week.

Birthday preparations were underway. Although we were going to have a small crowd, we planned to make a big deal of his 4th birthday at home. On Friday morning, his cough concerned me enough that I had my sister Krista who is a nurse come over with a stethoscope so we could listen to his lungs - at that point, they were clear.

We packed up and headed over to Ethan Gumabay’s house. In retrospect, it was his birthday celebration outside of the hospital! We went to visit with Ethan, his sister Kyra and mom Kim. We were also going to confiscate their moon bounce so Ryan could use it on his birthday. The big event was that Ryan was going to be able to go into their "hot pool" (that’s a hot tub to others). Ry discovered the "hot pool" during last year’s vacation at the beach - he much preferred it to the pool or ocean - so needless to say, he was ecstatic to get into Ethan’s hot pool.

Ryan got cranky kinda fast at Ethan’s - which was a sign of what was coming - one that I was willing to ignore because I had fallen into the false sense of security since his counts were unusually high and he looked so good for several weeks. He fell asleep on the way home and slept for nearly 5 hours. He awoke to a fever of 101.1 (100.5 is the magic number for cancer kids). We called the doctor but since his counts had been so high earlier in the week, she told us to give him Tylenol and keep watch on him. If his temperature went up again, she wanted us to report to the hospital.

July 31, 2004 - RYAN’S 4TH BIRTHDAY!
Sure enough - at 1 a.m., he hit 101.9 which meant we needed to pack stuff up and check in on his birthday.

Dr. Weil heard crackling in his lungs and suspected pneumonia. An x-ray did not confirm her suspicion. Instead, it looked like it may be a viral infection like Bronchitis. She was not ruling pneumonia out, but there was no clear picture definitively showing pneumonia. He was given cefepime intravenously - an antibiotic used for pulmonary infections. He also started Zithromax orally - another antibiotic commonly referred to as a Z-pak.

The biggest shock: his counts were 312. That meant we were staying at least the night. We started neupogen shots (drug that artificially increases white blood cell count) to give his counts a jump start.

The Birthday Celebration - Every person I saw in the hospital learned from me that it was Ryan’s birthday - in fact, I called the nurse’s station before we got there to tell them. I figured, if you have to spend your 4th birthday in the hospital, you might as well be treated like a king. And everyone complied! The hospital made a banner and gave him a gift. The nurses oogled over him. I almost got the person who transported us to the x-ray to sing Happy Birthday - until she realized I was crazy. His x-ray was his birthday picture - I told him the hospital wanted a picture of him on his birthday.

And then the family came up. Chris and Angie were down from Pennsylvania to celebrate Ryan’s birthday. They brought a cake up and along with Evan, Halmony & Papa, we sang Happy Birthday at the top of our lungs and Ryan blew out his #4 candle. My sister Lisa made it with her family and we all enjoyed cake and Ry enjoyed his presents - especially the Pokemon cards.

It’s not exactly the celebration we had anticipated, but a celebration none-the-less. At one point he told me that he wanted to go home. When I explained to him why he couldn’t do that, he said, "Okay, can we go to the playroom?" He put on a mask and off we went to the playroom. And when he fell asleep that night, I realized that he enjoyed his 4th birthday - and I was glad.

August 1, 2004
As it turned out, Ryan looked great while we were there and Dr. Weil gave us the option to stay until Monday (her preference) or leave Sunday night after no fevers for 24 hours (which would be about 10 pm on Sunday night) - so long as we promised to come back if he got another temperature or any other signs appeared. We promised - then packed, checked out, and got home around 11 p.m. Just in time for a midnight spin on his new bicycle - a gift from my office - that he discovered when we got home and he pushed his way through a room full of balloons - courtesy of decorations by my sister Krista while we were in the hospital.

August 2, 2004 - The shopping spree.
I’ll leave you on this note. Ryan received a substantial gift certificate to Toys R Us as a birthday gift from Krista. He and his dad made a trip to the store during the day. Almost indiscriminately he tossed items into the cart. At one point Greg said, "Ryan, you don’t even like this thing." (It was a crash test dummy figure.) To which he replied, "Dad! - It’s my money." Oh they learn early. And yet another sign that he is on the mend. No fevers since we’ve been home and counts should be astronomical as we are still doing the neupogen shots. The antibiotics will end just in time to start his next cycle on August 11, 2004.

ONLY 4 MORE CYCLES!

Enjoy the remainder of your summer - even these hot steamy days are better than the alternative.

Warmest (and steamiest) regards,

Lori