status-updates

January 3, 2012 Tuesday

Wed, 04 Jan 2012 02:43:37 +0100

Today Oliver received chemo in his spine and vincristine in his port. This spinal will be his first spinal received with no sedation or similar type drugs. After the reaction to the small dosage of atavan in the last spinal, his doctor felt he would be better off with nothing. I was nervous for Oliver today, but he was so easy going and brave. The procedure was much faster than it was with the sedative drugs and while it was uncomfortable and painful, Oliver endured. I am so proud of him! This will mark our 3rd new year starting with a spinal. I know 2012 will bring many blessings and wish you all a very happy new year! Thank you for your thoughts and prayers.

December 20, 2011 Tuesday

Wed, 21 Dec 2011 02:17:24 +0100

I cannot believe it has been two months since my last post. I am so sorry for the delay! There really hasnt been much to report. Oliver has been playing flag football, excelling in school and is happy. Last week however, he spiked a very high fever. We did not have to go to ER because he no longer has his port. The doctors suspect this is a viral issue, but last night he spiked a high fever again and unfortunately had to go to ER because it was so close to the fever last week. His counts came back fine but we are waiting on a blood culture to come back. He has had a mild grade fever all day with a cough and so we are keeping an eye on it. No hospital or ER, and hopefully he will get over this cold. He has a cough and runny nose, so it is probably just something going around. Unfortunately, when your child has cancer, you cannot dismiss even the smallest routine cold. We will keep everyone posted on his progress.

October 23, 2011

Mon, 24 Oct 2011 00:24:25 +0100

It has been one month since my last post. Oliver recently received a spinal which went ok. The procedure is slightly different in California than Texas. Instead of receiving versed, he was given ativan. I am definitely not an expert on drugs, but this is the first spinal he has received that he actually remembers. My understanding is the ativan is for anti-anxiety, the versed is a bit stronger and more like an anesthetic. While I really do not like that he remembers the spinal, I think this alternative is better then going completely under anesthesia so many times. He was a model patient but did have a reaction of temporary double vision which the doctors believe to be from the ativan. Oliver's ANC dipped below 1,000 and so we are due to check counts again this week. I will keep everyone posted on the results. Everything else is going well. Oliver is excelling in school, joined the chess club and is playing indoor soccer. He is such a kind, strong and helpful child. We are very blessed with two wonderful children.

Sepetember 24, 2011

Sat, 24 Sep 2011 15:35:48 +0100

Update
Yesterday Oliver had his portacath removed. The surgical procedure took about 45 minutes from start to finish. He is recovering well and the doctor also corrected a scar from the first surgery when his port was placed. His counts have been great and he is happy to have his port out.

My rant
While Oliver's treatment plan remains the same, we are finding some differences in application of treatment between Houston and San Francisco. Which is what prompted the port removal. The port does cause additional risk for infection (though the risk is very small) and can preclude children from contact sports (not something we are rushing right into - though the definition of "contact" seems to vary between HOU and SF also). So most children in SF have their ports removed when they reach the maintenance phase while in Houston ports are removed once treatment is over or unless the child plays football. So from now on, Oliver will receive vincristine through IV in his hands or arms. We had a trial run on September 12 when Oliver had his first chemo treatment in SF and he seemed to be fine with it. We also will begin doing Oliver's monthly pantamidine treatments at home instead of in the clinic. We werent expecting any differences so this took a little thought to get my head around the changes. But, in the end, they arent that drastic and Oliver seems to be adapting just fine. Another huge difference between HOU and SF are the number of children treated. I once heard that Texas Children's is treating over 400 children for luekemia. I was in shock in SF when there was only one other child in the waiting room of the clinic. The nurses indicated this was a typical day. SF and HOU are very highly populated areas. Does this make sense? I know that Texas Children's is well known and highly ranked (as is Oliver's hospital in SF). I also know that children travel from all over the world to get treatment at TCH. However, there is a part of me (it may be an irrational part) that believes there is a much higher rate of children's cancer in the Houston area than in other parts of the country. Most of the families we met at TCH were from the surrounding area, not a different part of the country. And when Oliver was first diagnosed, many people that I knew from the Houston area either had family members or knew of other children who had luekemia. When you look at the rates and statistics for childhood luekemia, this does not make any sense. I know this is not scientificly proven data, it simply my gut. But something should be done if I am right. Children do not deserve to have their childhoods taken from them due to a horrid disease. I plan to research this further and will let you all know if I find anything of meaning. In the meantime, thank you for keeping up with Oliver and continuing to keep him in your thoughts and prayers.

September 6, 2011

Tue, 06 Sep 2011 14:15:06 +0100

Today we have our first appointment at the children's hospital in San Francisco. We are nervous about the appointment and hope it goes well after such a big move. Our doctors in Houston assured us that this is a stable time to move in this phase of Oliver's treatment. (Oh, I suppose I should mention, we recently moved from Texas to California!) His ANC has remained steady around 1,200 and we hope it continues to stay in that range. Many of you may not know that September is Childhood Cancer Awareness month. Please show your support and wear a gold ribbon. Childhood cancer is very often overlooked and can affect any one of our children. Children do not have political or corporate connections to market and raise funds for cures like adults can. Let's do our part and support children with cancer.

http://www.youtube.com/watch?v=b7CBFakh09w

Thank you all for keeping up with the blog and for all of your prayers and support. We are very fortunate to have so many people that care about Oliver.

July 20, 2011

Thu, 21 Jul 2011 00:23:04 +0100

Hopefully everyone has enjoyed the summer. Oliver's has been quite eventful with a trip to Legoland and lots of fun in the sun. Today Oliver received chemo in his spine and vincristine through his port with his ANC totalling 910, which is right around the target. I will never get used these treatments, especially spinal days, but he recovered quickly and I continue to be amazed at his resilence and happiness.

Oliver also celebrated his 6th birthday on Monday. His spinal was orignally scheduled on his birthday, but thankfully we were able to postpone it a couple of days. We are so thankful to have another year with our son and steadily count the days to his last chemo treatment (Feb 2013). I can't help but wonder if Oliver never had leukemia, would I have celebrated his birthday with such gratitude and vigor. I like to think yes, but know that this has given us a renewed appreciation and forced awareness of the most beautiful and fragile sides of life. Indeed, a silver lining to this dark cloud.

May 24, 2011 Tuesday

Tue, 24 May 2011 21:58:39 +0100

I just realized it has been close to two months since I have updated the blog. I am so sorry to those who have checked only to find a stale post. Life has been so hectic between work and two kids, still no excuse, and I apologize. Oliver has received a spinal, a few chemo treatments through his port and breathing treatments of pantamidine since my last update. His at home chemo dosages have gradually gone up at each visit due to high ANC counts. Today his ANC decreased to 1020, which is within target range. I was so proud of him at his appointment today, he is so helpful to the nurses - he actually pushed the saline solution through his port and took off his own bandage so the nurse could remove the needle. He is bright and talkative and has grown and continues to grow radically despite all of the drugs. He enjoys kindergarten immensely and has made several friends. At times all of this is overwhelming, but we have no choice but to cope. Thank you all for your continued support and prayers for Oliver. One day, this will all be a very distant memory.

March 1, 2011

Tue, 01 Mar 2011 20:15:53 +0100

Counts today: ANC 970, Hgb 11.7, Platelets 264

Two weeks ago, Oliver had a clinic visit, ANC came back at 1570 which resulted in increase of home chemo pills (methotrexate). Today Oliver received vincrinstine through his port and a pantamidine breathing treatment. Both went fine and Oliver's doctor was happy with the ANC counts this week. Nothing new to report, which in this situation is a good thing. Seeking patience and acceptance, we have a long way in treatment to go. Feels like it will never end.

January 31, 2011 - Monday

Mon, 31 Jan 2011 22:18:31 +0100

Counts today :ANC - 1380, Hgb 9.6, Platelets, 252

Today Oliver received methotrexate in his spine today and a push of vincristine through his port. Spinal day are always long and exhausting. On top of the spinal, we were informed that Oliver's hemoglobin has been gradually getting lower over the past few months. The doctor felt it was from the antibiotic (dapson) he has been taking to prevent PCP (a type of pneumonia immune compromised people are susceptible to). He previously was on the antibiotic batrim, but he switched to dapson as it was making his ANC low. So now, we are switching to pantamidine which consists of a monthly twenty minute breathing treatment. Today Oliver received his first breathing treatment (right after we found out about the issue). It was a lot for him, to have a spinal, then breathe with a mask on his face for what seemed to be an eternity of twenty minutes. Thankfully, the day is over, we are back home and Oliver is back to himself - playing with monster trucks and batman toys. He keeps asking how many more clinic visits are left. We have a little over two years to go. This is a difficult question to answer. We are all weary, but especially Oliver and its not like we are anywhere near the home stretch at this point. It is very frustrating that treatments for children's cancer are the longest and most aggressive. I am thankful at least though there is a treatment. And it is nice to see him playing happily now. I will take this part of the day with me to remember and forget the rest.

January 17, 2011 - Monday

Mon, 17 Jan 2011 21:40:04 +0100

1/4/11 Visit - ANC 1590
1/17/11 Visit - ANC 2900
Today we had a quick visit for count checks. Oliver's ANC increased slightly from his prior visit, but no increase in chemo. The next visit (in two weeks - Jan 31) Oliver will receive chemo in his spine. By this point in the treatment, Oliver has received enough spinals and pokes, that his understanding and tolerance for the clinic visits seems to have detiorated and I honestly do not blame him one bit. We have all grown weary and jaded from this entire arduous and unavoidable process. The reality of life with leukemia has had time to sink in and we are all dealing with it in our own ways the best that we can. However, we have no choice but to press on and enjoy the time we have together.