Long Term Follow Up. Number 2!

“Writing is a socially acceptable form of schizophrenia.” —E.L. Doctorow
Boy am I feeling that, right now. So much has happened over the last several weeks. So much to process. This is what happens when I need to write, don’t feel like writing, avoid writing….then it piles up behind each other, clogging every other aspect of my life. I can literally feel the weight of these words on my chest and shoulders. Much of what I need to share is AWESOME…… others are just plain complex and unknown. This is going to be long. Please hang in there, there is so much to share.

Gregory and I left for his annual Long Term Follow Up (LTFU) appointment on Sunday, June 19. We received the call on Saturday that there was room for us at the Ronald McDonald House. Cannot tell you how excited I was to get that call. Last year we had to stay at a hotel and it was NOT fun. My love for RMHC is deep. Thank you to each and every one of you who support RMHC
Gregory and I headed out of town on Sunday, drove across this amazing state and landed at RonDon around 6:00 that night. Returning to Seattle this year was completely different. There was an air of success. We are two years post transplant and any stranger, glancing at Gregory, would never know what has transpired. 
We dropped our things in our new home and headed out the door to the grocery store next door, Metropolitan Market. Love this grocery store. We were browsing, soaking the familiarity, sharing memories (Yes, Gregory even has memories to share.) we rounded a corner and HELLO! we ran into the doc that was on staff for Gregory’s actual transplant, Dr Manley. Of course I recognized him immediately. I stood there and just stared at him, with this big goofy grin on my face. Gregory was strolling along at my side. I finally told him who Gregory was and he lit up. Then he got “that look”. The look that medical professionals get when they haven’t seen you for a while and suddenly see you in a medical facility. That Look that is guarding them from the potential bad news that might be dropping from your lips. That Look that wants to be joyful in seeing you/your child, knowing all too well, that frequently, a visit back after an extended period of time means that something bad has happened. Ex… Relapse. Secondary Cancer. Except….
I didn’t catch it. Not that time. I let him know we were here for Gregory’s LTFU, he breathed a visible sigh of relief and the reunion could begin in earnest with joy. The time that Dr Manley spent with us was his last rotation on BMT service. After that, he went to “regular” Hem/Onc attending. He is especially precious to us. Yes, there is also a heafty helping of Doctor Crush on my part. I’m not ashamed to admit that he makes my heart pitter-pat. Running into him, at the grocery store, as soon as we landed in Seattle was such an amazing moment. Dr M got to see Gregory… happy, functioning, healing and surviving. BMT docs don’t often get that opportunity. It was a fun reunion. We returned to RonDon, fixed a quick dinner, then re-acquainted ourselves with the place. Gregory was in seventh heaven. He scurried and scampered around like a kid in a candy store. Our last trip to RonDon was for/during transplant. This time he was able to enjoy every last ounce of what they have to offer families and he soaked it up like a giant sea sponge. It filled me with delight to see him enjoying himself so much. 
We were up early on Monday to begin our first day at SCCA. This feeling of joy continued as we pulled into the parking garage. We rode the elevator up to the main floor and entered the lab waiting area. THIS is where it changed. SCCA is the patient care clinic for the Fred Hutchinson Cancer Research Center. If you are a pediatric cancer patient, that does not require a Bone Marrow Transplant, you report to clinic at SCCA at Seattle Children’s Hospital. BMT pediatric patients go to the main SCCA clinic, at The Hutch campus. SCCA at The Hutch is for adults. Six floors of nothing but adult cancer treatment. Except for the small minority of pediatric BMT patients. Gregory is an anomaly at that place. There was delight on the faces of the fellow patients/families at seeing Gregory. Initially. Then they realize that he is the patient. The expressions change. Worry, concern, compassion, fear, understanding…. many of them cannot look me in the eye. The questions in their eyes hurt too much. I had this strong desire to holler to the room….. “He’s two years post transplant and doing WELL!” Instead, I do my thing, keeping Gregory present and happy, ignoring their pleading eyes, soaking up the wonderment of this precious child that is surviving.
Monday we had: 
  • Finance
  • Blood Draw
  • Nurse Visit
  • PA/Doc Visit (We met with Natalie Riotto, PA-C & Dr Ann Woolfrey)
  • Pharmacy
  • Nutrition

During the first day of LTFU, we go over everything that has transpired in the last 12 months. *whew* Then we go over his list of appointments for the week and decide if anything needs to be removed or added. It was decided that his scheduled Pulmonary Function Tests needed to be cancelled. He is just too small to do these tests and get accurate results. Instead, we added a chest x-ray and a high resolution CT with sedation. 

We left clinic, did some REAL grocery shopping and returned to RonDon. That night there was a family meal. These meals are amazing. Volunteers come in, from various organizations, and prepare meals for the families staying at RonDon. This is also the first time Gregory has been able to participate in these meals. He was tickled. We had meals every night. The second night I asked Gregory if he wanted to go down and see what was for dinner… he said: “We are having ANOTHER FEAST! Eeeeeeeeee!” We also had entertainment Monday and Tuesday night. Monday night’s entertainment was hilarious. For everyone. Devin Reynolds was his name.  Seriously. If you are in the Seattle area and need comedic entertainment, this guy is fantastic. Once again, for all ages. Just enough of that adult innuendo that is above kids’ heads to keep adults giggling in their seats. Gregory got to help with one of his tricks and wouldn’t you know it, Devin made a rabbit appear. Wait for it. Here is comes. As soon as Devin lifted to cover off the pan containing the rabbit, in a raised voice I tell my child (and the rest of the room) “Gregory! Don’t touch the rabbit!” Ugh! Yes, he is still immune compromised and I am anal retentive. Hey, it’s boded well for us, so far. Keep reading, you’ll understand soon. Gregory was, once again, filled with glee to to do this. Can you tell why I heart the RonDon so much. It is such a bright spot for us families. 
Tuesday we had:
  • Physical & Occupational Therapy Exam
  • Dental Exam
  • Eye Exam

The PT/OT provider was AWESOMESAUCE! We were once again back to SCCA. Little did I know that they had recently brought in a PT/OT person just for peds. She was wonderful with Gregory. He had a blast while she evaluated him. Over all Gregory is doing great. He still has some tightness in his ankles, refuses to hop on one foot and insists on going down stairs one at a time. Meaning, down one step with both feet. Not one foot per step. Make sense? These are minuscule things that we are now working on and Gregory is fantastic at knowing he need to do these things and beaming with pride when he practices……”See Mommy!”

Dental was not a surprise. I must admit, brushing his teeth is really low on my priority list. Yet, it’s been 2.5 years since he has had a dental cleaning. He cannot have one until he is free of immune suppressing medications. He has eight crowns and four caps on his teeth and they help to create gingivitis. Which Gregory has a healthy dose significant amount of.
We had to travel to Swedish for his eye exam. They were not able to get us in with Seattle Children’s ophthalmology, which is where he is usually seen. This turned out to be a great thing. Gregory saw Dr Richard Bensinger. He was able to answer my question about cataracts, gave me some great information and is now in our back pocket should Gregory ever develop eye GVH. My question about cataracts was…. WHY do steroids cause cataracts? What is the physiological answer? He quite simply answered with: We don’t know. Which is an A-O-K answer. So… we do not know why steroids cause cataracts, they just do. 
Wednesday we reported to Seattle Children’s for a DEXA scan and bone age x-ray. The DEXA scan looks at his bone density. With Gregory’s prolonged usage of steroids, we monitor the density of his bones. Steroids also cause us to lose it. Gregory does have Osteopenia, but it has not progressed. *whew* 
Early Thursday we reported, again, to Seattle Children’s for his chest x-ray and High Resolution CT with sedation. On Wednesday night Gregory started with a wet cough. It was not productive, he did not have nasal secretions, he did have sneezing. It was too late to call Seattle Children’s to talk about his sedation the next day, so we just proceeded as planned. He had his chest x-ray, then we went over to Nuclear Medicine. We had a chat with the anesthesiologist and it was decided that the risk of sedating him with any kind of respiratory symptoms was not worth proceeding with the CT. Gregory has had High Res CT’s every six months for the last 18 months. Each one has yielded no results. Clear CT’s every time. So we headed back to RonDon and hunkered down. Gregory was starting to feel run down and now that he had respiratory symptoms, he was on house arrest. Confined to our room. In order to protect the other families, if you have symptoms you are sequestered to your room. Which was OK. We both needed the rest.
When we were at Children’s on Wednesday, we went to the Hem/Onc unit to visit and catch another of my favorite docs. Dr Lauri Burroughs was attending on several occasions during transplant stay. It was another opportunity for one of Gregory’s docs to see him post transplant and doing well. We did get The Look from several of our previous nurses, yet this time I knew it was coming and quickly assured them that we were there just to visit during our LTFU. While watching the relief flood their faces. It was soul filling to see Lauri. For both of us. Not only are these doctors managing patient care, but they all have areas of research. They leave clinical practice and work in the lab, every month. Yes, I am in love with our treatment center. Fiercely.
Friday we had our conference to discuss the results of the weeks worth of tests. There was an additional lab draw added and we had to have that done first thing in the morning. When we returned in the afternoon to meet with Dr Woolfrey, we were pleasantly surprised to find that Dr Burroughs was covering the out-patient clinic. (Nothing against Dr Woolfrey, I just really, really like Dr B!) 
So….. 
  • Gregory remains 100% donor and no evidence of disease.
  • His cataracts remain. Plan: continue to monitor every six months. 
  • His Osteopenia remains, no progression. 
  • Chest X-Ray: clear
  • Bone Age ~ a little over 5 years.
  • Despite what I feel to be low counts, they are considered normal. Even though they are not in the ‘normal’ range. (Hematocrit, Platelets, White Count & ANC)
  • He has Iron deficiency. Which is weird. Transplant patients receive so many red cell transfusions that more often than not, they end up with iron overload. Gregory is now on a twice daily iron supplement. 
  • Gregory has: MethemoglobinemiaMethemoglobin is an oxidized form of hemoglobin that has an increased affinity for oxygen, resulting in a reduced ability to release oxygen to tissues. Which is most likely why he has decreased oxygen saturation. This can be caused by Dapsone. We have discontinued his Dapsone and replaced it with Bactrim. SCCA recommended that we have a pulmonology consult to rule out any other causes for his decreased oxygen saturation, including a home Pulse Ox to spot monitor him and a sleep study. The reason Gregory is on Dapsone to begin with is that Bactrim suppressed his counts, immediately post transplant. The theory is that since he is so far out from transplant, this should not happen again. We will see at his next clinic visit on the 28th. Dapsone/Bactrim are antibiotics that we use as a  prophylaxis to prevent Pneumocystis Pheumonia.
  • Gregory’s immune system is not successfully reconstituting. From what I gather… Gregory is producing white cells. The cells that fight infections. What he is not making are antibodies. The cells that recognize what needs to be fought, then signal the white cells to fight. He has bee receiving IVIgG, since about three months post transplant, every time his level falls below 400. Which has equated to every 4-8 weeks. IgG are donor antibodies. It is separated from whole blood donations and comprised of antibodies from 1,000 different donors. We now have a plan in place for Gregory to receive IVIgG every four weeks. Keeping his level above 600. This also means that Gregory cannot be re-immunized. Not until he is making his own antibodies. We will continue this therapy until Gregory is able to sustain/increase his IgG level. Once that happens, we will discontinue IVIgG, wait three months, then re-check his immune status. *sigh*
  • We have been given the green light to discontinue his Sirolimus. Provided he does not have any GVH flares. Gregory will have his labs checked at his July 28 appointment and then we can simply STOP the sirolimus.

I’m sure I’ve left out several details. This is what I have from memory. Once I receive the LTFU packet of results from SCCA, it will refresh my memory and I can fill in the blanks. I do not know what the last three items mean in terms of being able to recover. The data review conferences happen so fast that I often can’t formulate good questions until after I’ve walked out the door. I do have a list of questions for Dr J when we see her later this month. Gregory see his endocrinologist on July 14. It does sound like Growth Hormones may be off the table. *squee* Hopeful, but not holding on to that. We did learn that one of Gregory’s chemos leaves him with a 30% chance of thyroid problems. The risk does not decrease as he ages. At any time it could crop up. 

I have so much more to share, but it will have to wait for another entry. There is plenty here, anyway. Just getting this down is starting to lift my spirits. Releasing it to you and posterity. Stay tuned, though. I have such great things happening in our life. 
~Mindi
Momcologist
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About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
This entry was posted in bactrim, dapsone, immune reconstitution, IVIgG, ltfu, methemoglobinemia, sirolimus, year 2. Bookmark the permalink.

24 Responses to Long Term Follow Up. Number 2!

  1. Samala says:

    Auditory plus visual = better understanding ❤ Thanks, as always, for your words. Music is FAB too! Millions more to say, in person would be better…

  2. Ivory says:

    So much good news (won't lie, I cried when I read still 100% donor), but still so many battles to fight. Looking forward to your next update!

  3. Anonymous says:

    Wow, what a great post. What a "life force" (to borrow dr. Suzuki's term) that is in Gregory and you! I do have a question about m….anemia 🙂 and dapsone. How low are Gregory's numbers? Just curious since Luc is on dapsone and always hovers around 94 and hgb 8-9 – not low low, but they always seem to wonder about it. Perhaps I will suggest an iron supplement… Seems like you have a great community there. ❤ Ingrid

  4. Anonymous says:

    Mindi~~Thank you so much for sharing such a wonderful *Gregory* update!!!:) I absolutely love the variety of music playing in the background as I read your words…can I say AWESOMESAUCE???[adore that word,btw] Have a great weekend.Hugs & Blessings to you all~~Lisa from Virginia:)

  5. Sam ~ ❤ you more.Ivory~ *big deep breath* I know. The immune system stuff came as a surprise. I've been a little off center ever since getting this news…. Love, love, love…. YOU!Ingrid~ Gregory has been sat'ing at 92ish since May of '10. We doubled his Dapsone in February of '10. He was 18K at that point and has been on 25mg/day of Dapsone. We use hematocrit in this region. Versus hemoglobin. His hematocrit hovers between 27-31. Normal reference range is 34-40. I have no idea how this would effect Luc's treatment. Considering he is still in treatment I would assume that his low hbg is chemo related. We had a baseline saturation of 100 for Gregory, up until May of '10. Do you have one for Luc? Before giving an iron supplement, they need to look at his ferritin levels. I'm telling you our blood system is so stinkin' complex. Intriguing, fascinating, but complex. We do have a great team. I'm very pleased with out two treatment centers. Love you, woman!Lisa~ Thanks, lady. Consistently reading and dropping a few lines. *muwah* To answer your question… Marysville is literally a hop-skip-'n-a-jump from Seattle. Just a wee bit up Hwy 405. About 30 miles. *fierce squeeze*

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  22. Yogesh says:

    jaghoppasigenOctober 17, 2011 Social anxiety is a lot more than being nevuros on interviews or on many things.That means you are insecure and have low self esteem.Real social anxiety means you cannot even think of going to a public place with lots of ppl or even some people bc you will get nevuros and want to crawl back into a whole.If you have that kind of anxiety, seek professional help and they may give you medication to relax a bit. Clonazepam works great as a relaxant but it is a highly controlled medication and habit forming.Hoewver I take that one for a very severe problem that is called extrapiramidal reactions and it takes care of the problem plus it makes me more at ease when I am in social situations that Im not at east at all with.If you dohnt have this social anxiety that you have to crawl into a hole or you panick and get heart pounding fast, just practice talking about what you will before you face those people you will see.Take deep breathes, relax yr mind, light a candle and stare at its blue flame, listen to some slow soft music and remember all the experience of this when you are inthe social situation, so calm down mentally and b prepared.I think its normal what you go through so dont worry too much.

  23. Thank you for the auspicious writeup. It if truth be told was a amusement account it. Glance advanced to far brought agreeable from you! By the way, how can we keep in touch?

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